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To understand the systems underlying current rehabilitation models of care used with children and youth (0-21years) who sustain traumatic brain and/or spinal cord injuries. This study gathered qualitative data on service structures, service organization, and the barriers and facilitators of service provision in selected medical rehabilitation service(s) (MRS) and community-based rehabilitation service(s) (CBRS). Informants from 11 rehabilitation services were interviewed using a semi-structured interview guide. Interviews were analysed in NVivo using content analysis method. Experiences shared by the service representatives indicated that most services supported children and youth with brain injury, with a limited number also specializing in spinal cord injuries. MRS often delivered care in inpatient or outpatient settings, while CBRS offered home/community-based services. Care planning often started either prior to or shortly after admission from acute care settings, using either multidisciplinary or interdisciplinary teamwork models. Strengths of the services included innovation and provision of family-centred care; while challenges experienced included difficulty translating evidence into practice and poor team communication. Models of care were similar across services, with a focus on providing family-centred care. Several shared challenges were described, and service representatives expressed interest in forming partnerships and collaborations to address these challenges through innovative initiatives.

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.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.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).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.

This study explored the feasibility and acceptability of a videoconferencing group psychotherapy intervention for parents of children living with cerebral palsy. A six-session Acceptance and Commit...

Parents of children with serious childhood illness or injury (SCII) are at risk of experiencing poor quality of life (QoL). This study investigated the nature of parent QoL at the time of child diagnosis and seven months post-diagnosis, the change in parent QoL over time, and early factors influencing short-term and longer-term parent QoL. The sample was drawn from a prospective longitudinal cohort study conducted within a paediatric hospital setting. Participants comprised 223 parents of 167 children diagnosed with a life-threatening illness and hospitalised in the cardiology, oncology, or intensive care departments. Examined data included QoL ratings completed by parents within four weeks of diagnosis and seven months post-diagnosis, and demographic, illness-related, and psychosocial predictor measures collected within four weeks of diagnosis, or four months post-diagnosis. Generalised Estimating Equations were utilised to analyse data. Results indicated poor parent QoL at diagnosis, and normalised parent QoL at seven months. Improvement occurred most noticeably in the psychosocial domain. Reduced acute stress symptomatology and increased psychological flexibility were associated with higher parent QoL at diagnosis. Increased perceived emotional resources predicted enhanced parent QoL at seven months. Paediatric medical care teams should consider the challenges to QoL experienced by parents of children with SCII. Parents reporting acute stress symptoms during the acute-illness phase should be prioritised for intervention. Further, parent-dyads presenting at post-acute care settings reporting poor emotional resources would benefit from psychosocial and educative support.

This paper explored clinicians' experiences of the goal setting process with children and adolescents with acquired brain injuries (ABI) and their families in paediatric neurorehabilitation. Semi-structured interviews were conducted with 13 clinicians, all members of an interdisciplinary paediatric rehabilitation service, who work with children and adolescents with ABI and their families. Interview transcripts and additional data were analysed using constructivist grounded theory methods. Three main themes and sub-themes were developed: (1) Seeing the bigger picture: Goals change over time; Families set bigger picture goals; Need-to-dos: Goals that the child/adolescent needs to achieve; and Want-to-dos: Goals that the child/adolescent wants to achieve; (2) Collaborating as a team: Everyone needs to be on the same page; Hearing the child's/adolescent's voice; and Parents as advocates; and (3) Recognizing and navigating challenges: Child-/adolescent- and family-related challenges and Time as a service-related challenge. Participants perceived the clinician's role during goal setting as that of an active collaborator, enabling children and adolescents with ABI and their families to generate meaningful goals. These findings demonstrate insights into goal setting in paediatric ABI neurorehabilitation from clinicians' perspectives, and highlight the importance of collaboration, flexibility and anticipation of challenges in facilitating children's, adolescents' and families' involvement in this process.

In cost-utility analysis, outcomes are usually measured in terms of quality-adjusted life years, where length of life is adjusted by levels of health-related quality of life (HRQoL) using a single value, known as a health state utility value (HSUV). This study explores the HSUVs of parents of children with a serious illness admitted within three hospital departments (cardiology, oncology and paediatric intensive care) across four time points, compares HSUVs with Australian population norms and examines predictors of parental HSUVs. Data were obtained from the Take a Breath study, where parental HSUVs were measured using the Assessment of Quality of Life-8 Dimensions (AQoL-8D). Descriptive statistics and t-tests compared the AQoL-8D scores with population norms, while repeated measures ANOVA was used to compare parental HSUVs of children treated across illness groups over time. Regression analysis was performed to determine predictors of parental HSUVs. Parental HSUVs were not significantly different from the general Australian population norms (p = 0.939), as measured by the AQoL-8D. However, statistically significant differences were observed in the psychosocial super-dimension (p

This study explored the experiences of goal setting in paediatric rehabilitation from the perspectives of children and adolescents with acquired brain injury (ABI) and their parents in paediatric rehabilitation. Using a qualitative research design, 15 semi-structured interviews were conducted with 13 parents and 8 young people with ABI aged between 9 and 18 years who were engaged in outpatient rehabilitation. Interview transcripts were analysed using constructivist grounded theory methods. Two main themes and several sub-themes emerged: Experiences of goal setting

Contains fulltext : 219463.pdf (Publisher’s version ) (Closed access) The experiences of diagnosis of congenital heart disease (CHD), cardiac surgery and hospitalisation(s) are distressing and represent a significant stressor for a child and family, which may impact psychosocial development. This systematic review provides a synthesis of psychosocial outcomes of infants and young children with congenital heart disease who had cardiac surgery early in life. Twenty-eight studies related to infant and young children's psychosocial development, specifically emotional, social and behavioural functioning were identified. Variability was related to methodological factors including differences in study design, varying measurement tools and heterogeneous samples. Despite these limitations, the majority of studies were of high quality. The most common finding was a high prevalence of low-severity emotional and behavioural dysregulation. Young children with severe CHD or comorbid conditions experienced greater impairment, with higher rates of externalising behaviour problems, although internalising behaviour problems were also evident. This review integrates findings from literature in the past 28 years on the psychosocial well-being of infants and young children with CHD and demonstrates a risk for emotional, social and behavioural development difficulty, and, importantly, that symptoms of psychosocial impairment are detectable very early in infancy. We advocate for assessment and monitoring of emotional and behavioural regulation and social development to be routinely conducted from infancy to enable prevention and early intervention. 18 p.

Research investigating the cognition of children exposed to non-familial trauma is scarce and the effects of post-traumatic stress symptoms in this population remain unclear. Thus, this research aimed to investigate the cognition of children exposed to motor vehicle accidents given the high incidence of this trauma globally. It was hypothesized that children with post-traumatic stress symptoms (PTSS; i.e., children with subthreshold or a full diagnosis of PTSD; n = 6) would perform significantly worse on cognitive measures compared to children exposed to trauma only (TO; i.e., children with very minimal or no PTSS; n = 10) and a healthy control group (n = 19). Analyses showed children with PTSS demonstrated significantly poorer perceptual reasoning F(2,32) = 7.21, p = .01, partial η2 = .31; verbal learning F(2,32) = 3.87, p = .05, partial η2 = .20; and delayed verbal memory F(2,32) = 4.40, p = .05, partial η2 = .22, compared to HCs. The magnitude of the differences between the groups was large. Differences in immediate verbal recall, executive functioning, and verbal intellectual abilities were moderate to large in magnitude, with the PTSS group performing worse than both groups, but these findings did not reach significance. Overall findings from this study provide further support for the notion that children exposed to non-familial trauma with significant PTSS display cognitive difficulties compared to healthy children.

Objective The aim of this study is to assess the feasibility (uptake, retention and adherence) and acceptability of a combination of smartphone apps to deliver a digitized safety plan, BeyondNow, and personalized management strategies, BlueIce, with adolescents discharged from a mental health inpatient ward following self-harm, suicidal ideation and/or behavior. Methods Participants in this pre-post pilot study included 20 adolescents between 13–18 years, presenting with self-harming or suicidal behaviors in an inpatient psychiatric ward at a tertiary pediatric hospital. Participants were familiarized with the apps and completed baseline measures prior to discharge. They used the apps for six weeks before completing the follow-up survey, which measured feasibility and acceptability of the apps, as well as suicide resilience. Results Seventeen participants completed the pilot. Most of the sample accessed both apps at least once, three accessed the BeyondNow safety plan five times or more, and six used the BlueIce toolbox five times or more. A total of 73.5% of the sample that experienced a crisis used at least one of the apps at least once. Forty seven percent felt that the apps would not keep them safe when in crisis, although almost all of the sample rated both apps as easy to use (94% for BeyondNow, and 82% for BlueIce). Medium to large effect sizes were also found with regard to improvements in suicide resilience. Conclusion Both apps were found to be feasible and acceptable in this population, and easy to use, although no conclusions can be drawn regarding the clinical efficacy of the apps.

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.

This study explored the relationship between individual and family-level risk in predicting longer-term parental distress following their child’s unexpected diagnosis of serious illness. A mediation model was tested, whereby parents’ pre-existing psychosocial risk predicts longer-term posttraumatic stress symptoms, indirectly through parents’ acute stress response. One hundred and thirty-two parents of 104 children participated. Acute stress response partially mediated the relationship between psychosocial risk and posttraumatic stress symptoms, with a moderate indirect effect ( r2 = .20, PM = .56, p < .001). Findings demonstrated that cumulative psychosocial risk factors predispose parents to acute stress and longer-term posttraumatic stress symptoms, highlighting the need for psychosocial screening in this population.

This study investigated factors associated with acute stress symptoms in parents of seriously ill children across a range of illnesses and treatment settings within a pediatric hospital setting. It was hypothesized that psychosocial variables would be more strongly associated with acute stress responses than demographic and child illness variables. Participants were 115 mothers and 56 fathers of children treated within the oncology, cardiology, and intensive care departments of a pediatric hospital. Acute stress, psychosocial, demographic, and medical data were collected within the first 4 weeks of the child's hospital admission. A robust hierarchical regression model revealed that psychosocial factors significantly explained 36.8% of the variance in parent acute stress responses (p < .001); demographic variables significantly added a further 4.5% (p = .022), but illness-related factors did not contribute to the model. Findings support the implementation of a general psychosocial screening approach for parents across the wider hospital system, and that psychosocial risk factors may be targeted in interventions across different illnesses and treatment settings to improve parent outcomes.

This study investigated factors associated with long-term mental health outcomes of parents of children with a cardiac illness. The objective of the study was to investigate the hypothesis that acute mental health status and psychosocial risk factors (eg, acute stress reactions, quality of life) would be more strongly associated with long-term mental health outcomes than demographic, diagnostic, morphology, or procedure-related factors.Participants were 31 parents of children who underwent cardiac operations in a pediatric hospital. Acute mental health status, psychosocial risk, demographic information, morphology, and procedure-related data were collected within the first 4 weeks of the child's hospital admission. Mental health outcomes, including symptoms of posttraumatic stress, depression, anxiety, and general stress, were collected at a 2-year follow-up.Acute mental health status and psychosocial risk, specifically acute stress reactions, contributed significantly to parent mental health, explaining 44% of the variance in the parent posttraumatic stress scores (P .001) and 40% in depression scores (P.001). Morphology and procedure-related factors (eg, prolonged mechanical ventilation) explained a further 12% of the variance in parent posttraumatic stress scores (P = .015) and a further 13% in depression scores (P = .014). No associations were found with demographic factors.Results suggest that acute mental health status is more strongly related to parent mental health outcomes than morphology and procedure-related variables in children undergoing neonatal cardiac operations and that demographic variables are not associated with mental health outcomes.

Objective: Explore the mental health trajectories of parents following their child's life-threatening illness/injury. Methods: Participants were 217 parents (mean age: 34.9–40.0; 66 fathers) of 165 children who presented to a tertiary hospital with a life-threatening illness/injury. Parents completed questionnaires about their mental health and psychosocial stressors within 4 weeks of the child's illness/injury (T1), and 4 months (T2), 7 months (T3), and 19 months (T4) postdiagnosis. Results: For both mothers and fathers, mental health symptoms were elevated at diagnosis declining to normal levels by T3, with a pattern of increase at T4. Fathers demonstrated a faster decline in symptoms between T1 and T2, and fathers, but not mothers, experienced a relapse in depressive symptoms at T4. Fathers reported higher rates of work changes. Conclusions: These findings have important implications for the design and timing of parental interventions to support families of children with life-threatening disease/injury.

This study explored the feasibility and potential effectiveness of a videoconferencing group intervention for parents of children with a life-threatening illness. Parent functioning was assessed at pre, post, and 6-month follow-up (N = 13). Semistructured interviews explored parent experiences of the program and clinicians’ experiences were systematically recorded. Attendance was high (92%) and parents reported comfort with the online delivery. Quantitative data revealed significant reductions on three of the nine measures examined (parent guilt/worry; unresolved sorrow/anger; lack of psychological flexibility). Clinician data are described and highlights the skills and program modifications required to adapt to the videoconferencing modality. A randomized controlled trial is now underway.

To examine the validity of the Psychosocial Assessment Tool (PAT) with families of infants (2 years) and children admitted to hospital with acute life-threatening illnesses.A total of 235 parents of 177 children admitted to oncology, cardiology, or pediatric intensive care completed the PAT and measures of acute stress, trait anxiety, family functioning, and quality of life, a mean 3.7 weeks following diagnosis. A modified PAT was used for families of infants, rendering two forms, PAT (2) and PAT (2+).Psychometrics for PAT (2) and PAT (2+) were acceptable. PAT Total and Subscale scores for each version were significantly correlated with validation measures. Internal consistency for PAT subscales was variable. Receiver Operating Characteristics provided some support for PAT cutoffs. PAT scores across illness groups were comparable.This study provides promising support for the PAT as a psychosocial screener for families of infants and older children across illness conditions.

Importance A substantial proportion of parents whose child is diagnosed with a life-threatening illness experience high levels of distress that can lead to long-term mental health difficulties. This can affect the child’s recovery. Objective To evaluate the efficacy of an acceptance and commitment therapy–based group intervention, delivered using videoconferencing, in reducing posttraumatic stress symptoms (PTSS) in these parents. Design, Setting, and Participants This study was a randomized clinical trial of an intervention for parents with elevated acute stress symptoms. It was a single-site study conducted in a tertiary pediatric hospital in Australia. Parents of children aged 0 to 18 years admitted for a life-threatening illness or injury to the oncology, cardiology, or pediatric intensive care departments were eligible. Participants were screened for eligibility within the first month after diagnosis or admission and then were randomized to the intervention group or the waiting list control group 4 to 10 months after diagnosis or admission. Recruitment commenced January 2014, and final postintervention follow-up was completed in February 2018. Data analysis was performed from July to September 2018. Interventions Treatment was a psychological acceptance and commitment therapy–based group therapy program called Take a Breath, which consisted of a 6-session parent-mediated psychological intervention delivered via online videoconferences over the course of 8 weeks. Waiting list control participants received treatment as usual and were offered the intervention 3 months after randomization. Main Outcomes and Measures The primary outcome was PTSS, as measured by the Posttraumatic Stress Disorder Checklist–Version 5 (total score range, 0-80, with higher scores indicating greater symptom severity). The PTSS was measured both before and immediately after the intervention. Changes in psychological skills taught within the intervention were also evaluated, including acceptance, mindfulness, values-based living, and psychological flexibility. Results Of 1232 parents who were assessed for eligibility, 313 were randomized; 161 were allocated to the waiting list control group, and 152 were allocated to the intervention group. Of those allocated, 44 parents in the waiting list group and 37 in the intervention group completed the postintervention questionnaire and were analyzed (81 participants total; mean [SD] age, 37.17 [6.43] years). Sixty-five participants (80.2%) were women, 48 participants (59.3%) were married, and 40 participants (49.4%) lived in rural or regional areas, or in a different state. In addition, 24 parents (29.6%) were in the cardiology illness group, 32 parents (39.5%) were in the oncology group, and 25 parents (30.9%) were in the pediatric intensive care unit group. The intervention group demonstrated significantly greater improvements in PTSS compared with the waiting list group (Cohend = 1.10; 95% CI, 0.61-1.59;P = .03). The mean Posttraumatic Stress Disorder Checklist–Version 5 scores decreased from 31.7 (95% CI, 27.0-36.4) to 26.2 (95% CI, 21.8-30.7) in the waiting list control group and from 23.3 (95% CI, 18.6-28.1) to 17.8 (95% CI, 13.8-21.8) in the intervention group. Conclusions and Relevance The findings of this study support the use of acceptance and commitment therapy to reduce PTSS in parents of very ill children, regardless of diagnosis. These findings also suggest that a brief, group format using a videoconferencing platform can be used effectively to access hard-to-reach populations, particularly fathers and caregivers living in nonmetropolitan areas. Trial Registration Australian New Zealand Clinical Trials Registry Identifier:ACTRN12611000090910

A systematic review of the literature investigating the early traumatic stress responses in parents of children diagnosed with a serious illness/injury. A literature review was conducted (September 2013) using Medline, PsycINFO, and CINAHL databases. Twenty-four studies related to parents of children hospitalized due to diagnosis of cancer, type 1 diabetes, meningococcal disease, trauma or serious injury, preterm birth and other serious illnesses requiring admission to intensive care were included. Parents were assessed for early traumatic stress symptoms within 3 months of their child's diagnosis/hospitalization. Prevalence rates of acute stress disorder in parents ranged from 12 to 63%. Prevalence of posttraumatic stress disorder ranged from 8 to 68%. Variability was related to methodological factors including differences in study design, timing of assessments, measurement tools, and scoring protocols. Psychosocial factors rather than medical factors predicted parent distress. This review integrates and compares early traumatic reactions in parents with children suffering a range of serious illnesses. Findings suggest a high prevalence of acute and posttraumatic stress symptoms in parents. Methodological inconsistencies made comparison of early traumatic stress prevalence rates difficult. Risk factors associated with traumatic stress symptoms were identified.

Objective: The Sydney Psychosocial Reintegration Scale for Children (SPRS-C) assesses psychosocial functioning in children with acquired brain injury (ABI). This article aims to: (1) describe normative data for the parent-rated SPRS-C and, (2) evaluate the discriminant validity of the SPRS-C. Methods: For Aim 1, participants were parents of typically developing children (TDC) aged 5–14 years (N = 200). For Aim 2, participants with ABI were aged 5–14 years (n = 26). A matched group of TDC was sampled from the larger normative sample to serve as a control group (n = 26). Results: For Aim 1, SPRS-C scores across the 10 age-bands were in the higher ranges. Correlation coefficients of SPRS-C total score with child’s age and parent occupational skill level were not statistically significant. For Aim 2, SPRS-C scores for the ABI group were significantly lower than the control group. Conclusions: These data provide a guide for clinical interpretation of the SPRS-C for measuring psychosocial functioning in...

Objective Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSSs) are common for parents of children with life-threatening illnesses or injuries. The impact of these psychological sequelae on parents' personal use of health services is unknown. The present study aimed to investigate whether PTSS severity prospectively predicts increased health service utilization (HSU), and to examine the relative importance of other predisposing and enabling factors in predicting HSU. Method The sample comprised 106 parents of children with various life threatening illnesses, who completed a resource use questionnaire at 19 months following their child's diagnosis or admission. HSU was assessed as reported general practitioner and psychologist visits. Results Parent PTSS severity at 7 months following their child's diagnosis or hospital admission predicted being in higher service utilization categories in the following 12 months; as PTSS score increased, the odds of being in higher categories increased. Hierarchical ordinal logistic regression procedures indicated predisposing and enabling factors failed to further explain HSU. Conclusions These findings highlight the importance of PTSSs to HSU and are consistent with studies of samples experiencing other forms of trauma, such as war or natural disaster. Our results also suggest that an individuals' need, in terms of the severity of their PTSSs, appears most important in predicting their health service engagement. Although this is positive, the effectiveness of this service use, in terms of cost and outcomes, remains unclear. Further, despite the levels of PTSSs observed in the present sample, a minority of individuals sought psychosocial care. (PsycINFO Database Record

Purpose – Childhood traumatic brain injury (CTBI) is one of the most common causes of mortality and disability in children and adolescents that impacts on neuropsychological, social and psychological development. A disruption of development in these areas often results in long-term problems with interpersonal relationships, participation in leisure and social activities and employment status. These social and psychological problems appear to persist longer in comparison to other functional consequences, although evidence is scarce. The purpose of this paper is to investigate social and psychological outcomes 15 years post-injury. Design/methodology/approach – In all, 36 participants post-CTBI (mean age 21.47 years, SD=2.74), 16 males) and 18 healthy controls (mean age 20.94 years, SD=2.21), 12 males) were recruited from a larger sample of a longitudinal study conducted at the Royal Children's Hospital, Melbourne, Australia. Information about social and psychological functioning was collected via questionnaires completed at 15 years post-injury. Findings – Results showed that post-CTBI, adolescents and young adults reported elevated risk of developing psychological problems following their transition into adulthood. CTBI survivors reported greatest problems on internalizing symptoms such as depression, anxiety and withdrawal. Social implications – Despite the reported psychological symptoms, the survivors of CTBI did not report more social problems than their peers. Further research is needed to identify long-term social and psychological problems so that optimal intervention may be provided. Originality/value – This is the first perspective longitudinal study investigating the young adults perspective of their long-term psychosocial outcomes following CTBI.

Background: Children undergoing open heart surgery are at risk of neurological injury. A cohort of 35 patients, who had undergone cardiac surgery during infancy, had a significant reduction in Bayley Scale of Infant Development scores at a 12-month assessment. This cohort has now reached an appropriate age to reassess developmental progress. Methods: Detailed psychometric testing was conducted on 20 children from the original cohort using the Weschler Preschool and Primary Scale of Intelligence, the Wide Range Assessment of Memory and Learning, and the Wechsler Individual Achievement Test. Parents completed the Connor’s Rating Scale, the Behaviour Rating Scale of Executive Functioning, and the Child Behaviour Checklist. Results: The mean age of the cohort at assessment was 6.6 (standard deviation 0.4) years. Mean scores on all tests of intelligence, memory, academic achievement, and executive function fell within the average range. Of the children, 20–35% were found to have significant difficulties across these areas. Mean scores in the areas of social, emotional, behavioural, and psychological functioning also fell within the average range. Of the children studied, 35% had clinically significant problems in these areas. There was only a weak association between the 12-month scores and the Full-Scale Intelligence Quotient at 6 years. Conclusion: Detailed psychometric testing of these children suggests that they generally function in the average range; however, a significant proportion falls below age expectations in all the areas assessed. This highlights the importance of long-term follow-up with routine developmental screening to allow identification of a subgroup that may benefit from early educational and behavioural intervention.

Childhood traumatic brain injury (CTBI) is one of the most common causes of childhood mortality and morbidity, with psychosocial impairment being among the most debilitating persisting consequences. Child and adolescent survivors of CTBI have fewer friends and lower self-esteem with a higher risk of developing a psychiatric disorder. In most research to date, findings in the psychosocial domain have been based on parent reports, with the child or adolescent only consulted infrequently. If there is a discrepancy identified between parent and child reported symptoms and behaviors, this is generally interpreted as resulting from impaired self-awareness in the child. The aim of this study was to 1) examine the agreement between self- and proxy-reported long-term psychosocial outcomes and 2) investigate the predictors of outcome 16 years post-CTBI. Thirty-three young adults (mean, 21.36 years; standard deviation, 2.75), with a CTBI sustained between 1 and 7 years of age, and a significant other completed questionnaires assessing the young adults' social and psychological functioning. Young adults and their significant other had good-to-excellent agreement on communication as well as alcohol and drug use scales. There was poorer agreement for the overall internalizing symptoms, anxious/depressed, withdrawn, thought, and rule-breaking behaviors. On the scales with poor agreement, there was no consistent contribution identified for any injury or preinjury factors. Preinjury adaptive behavior partly predicted withdrawn and overall internalizing symptoms, with a trend to also partly predict anxious/depressed and rule-breaking behavior reported by the significant other. Because young adults and significant others had poor agreement on the less-overt symptoms, these young adults may be at a higher risk of developing more-severe symptoms or disorders if it is not identified in time.

We piloted a novel parent-targeted intervention, Take A Breath (TAB), for parents of children diagnosed with a life-threatening illness (LTI) with the aim of reducing parental distress. Parents were assisted to adapt to their child's diagnosis, treatment, and recovery via TAB's combined acceptance and commitment therapy (ACT) and problem-solving skills training (PSST) approach. Participants were 11 parents of children with a diagnosis of cancer, or who had life-saving cardiac surgery at least 4 months prior. Parents completed questionnaires at pre, post, and 6-month follow-up assessing parent posttraumatic stress symptoms (PTSS), the emotional impact of the child's LTI (e.g., feelings of uncertainty, guilt and sorrow, emotional resources), and psychological elements targeted by the intervention (parental psychological flexibility and mindfulness). Parents reported significant reductions in PTSS and emotional impact from their child's LTI, along with significant improvements in parental psychological flexibility and mindfulness. Effect sizes were medium to large, and improvements were maintained at 6-month follow-up. Our pilot indicates the TAB intervention has promise for preventing or reducing parental distress associated with child LTI and warrants more rigorous evaluation. Although preliminary, these findings suggest that targeting parents' subjective perceptions of their child's LTI may be an effective approach to reducing parental distress. Our results also indicate the potential for such an approach to be adopted across diverse child diagnoses in the acute pediatric setting. Further, our findings provide early indications that ACT combined with PSST is an appropriate therapeutic approach within this context.

This study investigated factors associated with acute stress symptoms in parents of seriously ill children across a range of illnesses and treatment settings within a pediatric hospital setting. It was hypothesized that psychosocial variables would be more strongly associated with acute stress responses than demographic and child illness variables. Participants were 115 mothers and 56 fathers of children treated within the oncology, cardiology, and intensive care departments of a pediatric hospital. Acute stress, psychosocial, demographic, and medical data were collected within the first 4 weeks of the child's hospital admission. A robust hierarchical regression model revealed that psychosocial factors significantly explained 36.8% of the variance in parent acute stress responses (p.001); demographic variables significantly added a further 4.5% (p = .022), but illness-related factors did not contribute to the model. Findings support the implementation of a general psychosocial screening approach for parents across the wider hospital system, and that psychosocial risk factors may be targeted in interventions across different illnesses and treatment settings to improve parent outcomes.

BackgroundA substantial proportion of parents whose child is diagnosed with a life-threatening illness, experience high levels of distress that can lead to long-term difficulties in mental health, family functioning and child adjustment. This study evaluates the efficacy of an Acceptance Commitment Therapy-based group intervention designed to reduce distress symptoms in these parents. The program is delivered using videoconferencing to overcome factors that prevent participation in traditional face-to-face therapy.Method/designThe study is a randomized control trial of the Take A Breath group intervention for parents demonstrating elevated symptoms of acute stress, delivered via videoconferencing in six 90min group sessions. Participants are the primary caregivers of children aged 0 to 18years admitted for a life threatening illness or injury to the Oncology, Cardiology, Neurology or Intensive Care Departments of a tertiary pediatric hospital. Parents will be randomized to intervention or waitlist control 4-10months after their child's diagnosis. Measures will be collected prior to and immediately post intervention for intervention and waitlist parents to assess program efficacy. Intervention parents will be followed up at 6months to assess the maintenance of program effects. We predict that intervention parents will show fewer symptoms post intervention than waitlist parents (primary outcomes: traumatic stress, depression, anxiety, stress symptoms), reflecting improvements in the psychological skills addressed in the intervention (mediating factors). It is anticipated that reductions in mental health difficulties for intervention parents will be maintained up to 6months post-intervention and will be associated with broader improvements in parents' adjustment, child adjustment and child wellbeing (secondary outcomes).DiscussionThis study is unique in evaluating a group intervention delivered to parents of children affected by of a diverse range life-threatening illness or injury. Online communication technology is employed to reduce participation barriers. If proven efficacious, this trans-diagnostic approach offers the potential for broad use as part of the suite of psychosocial services provided to families through tertiary pediatric settings.Trial registrationACTRN12611000090910 . Trial Registration Date: 14/09/2011 Protocol Date/version: September 2015, version M Study Status: Ongoing.

Recently, there has been a surge of interest and research in social functioning throughout childhood and adolescence, and how social development is affected by acquired brain injury (ABI). Despite ongoing research and theoretical advances, there remains a lack of specific, relevant and robust measurement tools that draw upon current clinical and social neuroscience knowledge, and which are developmental in nature, to assess social competence within the nonclinical and the ABI population. The aim of the current project was to develop a questionnaire to measure social competence and the quality of relationships of children and adolescents between the ages of 5 and 18 years. This questionnaire, the Developmental Assessment of Social Competence (DASC), also aimed to be sensitive to the specific social problems often associated with children who have suffered ABI. The current article outlines the process and challenges faced in developing such a measure up to the initial pilot stage. Participants included a pilot group of 40 parents who completed the pilot questionnaire, as well as an established questionnaire that assesses social functioning. Parents rated their own children who were aged between 6 and 14 years, and who were within the nonclinical population. Preliminary analyses found that the children generally scored highly on the DASC, and that a higher score on most scales of the DASC tended to be associated with a higher score on an established questionnaire measuring social skills. These data are promising, and provide important information for the following stages of development and evaluation of this new questionnaire.

BackgroundHumans are by nature a social species, with much of human experience spent in social interaction. Unsurprisingly, social functioning is crucial to well-being and quality of life across the lifespan. While early intervention for social problems appears promising, our ability to identify the specific impairments underlying their social problems (eg, social communication) is restricted by a dearth of accurate, ecologically valid and comprehensive child-direct assessment tools. Current tools are largely limited to parent and teacher ratings scales, which may identify social dysfunction, but not its underlying cause, or adult-based experimental tools, which lack age-appropriate norms. The present study describes the development and standardisation of Paediatric Evaluation of Emotions, Relationships, and Socialisation(PEERS®), an iPad-based social skills assessment tool.MethodsThe PEERS project is a cross-sectional study involving two groups: (1) a normative group, recruited from early childhood, primary and secondary schools across metropolitan and regional Victoria, Australia; and (2) a clinical group, ascertained from outpatient services at The Royal Children’s Hospital Melbourne (RCH). The project aims to establish normative data for PEERS®, a novel and comprehensive app-delivered child-direct measure of social skills for children and youth. The project involves recruiting and assessing 1000 children aged 4.0–17.11 years. Assessments consist of an intellectual screen, PEERS® subtests, and PEERS-Q, a self-report questionnaire of social skills. Parents and teachers also complete questionnaires relating to participants’ social skills. Main analyses will comprise regression-based continuous norming, factor analysis and psychometric analysis of PEERS® and PEERS-Q.Ethics and disseminationEthics approval has been obtained through the RCH Human Research Ethics Committee (34046), the Victorian Government Department of Education and Early Childhood Development (002318), and Catholic Education Melbourne (2166). Findings will be disseminated through international conferences and peer-reviewed journals. Following standardisation of PEERS®, the tool will be made commercially available.

Despite suggestions that paediatric traumatic brain injury (TBI) disrupts social skill development, few studies have investigated long-term social outcome following the transition into adulthood. The current study aimed to investigate long-term social outcome, in a sample of 36 survivors who suffered a mild, moderate or severe TBI between 8 and 12 years of age. At 7-10 years post-injury, the age of participants ranged between 16 and 22 years. Social outcome was assessed using a number of self-rated and parent-rated questionnaires, in order to obtain self- and other-rated accounts of the groups' current social functioning. Predictors of long-term social outcome were also explored, with findings suggesting that young people who suffered mild TBI during childhood tended to be functioning at a higher level on some measures of social functioning, compared to those that suffered a moderate and severe injury. Further, results suggested that pre-injury adaptive functioning and socio-economic status predicted long-term functioning for some measures of social outcome. Finally, social problem-solving skills predicted the success of social reintegration post-TBI. These preliminary findings indicate that there is a risk of social difficulties following paediatric TBI continuing into adulthood, and that a number of demographic, social, and neuropsychological variables continue to predict social outcome even at this late stage post-injury.

There is debate regarding the relationship between executive function and social outcome following paediatric traumatic brain injury (TBI), due to inconsistent findings in the literature. It has been suggested that these contradictory results may reflect the absence of an established mechanism to explain this relationship. Yeates and colleagues (2004) proposed a possible model in which the maturity of social problem-solving skills mediates the relationship between executive function and social outcome. The current study aimed to explore this model and determine whether social problem solving mediates the relationship between executive function and social outcome in a TBI population. The sample consisted of 36 adolescents and young adults who sustained a TBI between 8 and 12 years of age. They ranged between 16 and 22 years of age and were 7-10 years post-injury. Findings indicated that a higher level of executive dysfunction was associated with less sophisticated social problem-solving skills and poorer social outcome. Further, the maturity of social problem-solving skills was found to mediate the relationship between executive function and social outcome in this group.

The impact of pediatric traumatic brain injury (TBI) on executive function (EF) development is well documented, with more severe injury associated with poorer outcome. Few studies have investigated the impact of pediatric TBI on EF in the long-term post-injury. The current study explored the relationship between injury severity and EF in participants with childhood TBI, following the transition into adulthood. The sample included 36 participants who had sustained TBI between 8-12 years of age. At 7-10 years post-injury, they now ranged between 16-22 years of age. Findings indicated that adolescents and young adults who suffered a more severe TBI during childhood tended to display a higher degree of executive dysfunction, but only in specific EF domains.

Studies investigating the neuropsychological functioning of children who experience trauma have predominantly focused on maltreated populations. This article presents a case study that details the longitudinal outcome of a girl who experienced a motor vehicle accident at 5 years of age. It highlights the clinical relevance of research investigating the neuropsychological impact of single-incident trauma on children. It illustrates difficulties clinicians face in discriminating between the effects of developmental delay, traumatic brain injury, attention-deficit/hyperactivity disorder, trauma, and posttraumatic stress symptoms or posttraumatic stress disorder, especially in children with compensable injuries. The state of the current literature is discussed, and directions for future research are provided.

Background Diagnosis of life threatening childhood illness or injury can lead to significant distress reactions in parents, with many experiencing clinically significant levels of post-traumatic stress symptoms. These symptoms can have long-term adverse impacts on parent mental health, family functioning, and the adjustment of the ill child. Independent studies have found such reactions in several different illness groups. However, very little research has systematically compared the prevalence, impact and trajectories over time of post-traumatic stress symptoms in parents across different childhood illness groups with an acute life threat. The current study seeks to map the course of post-traumatic stress reactions in parents of children with various life threatening illnesses over an 18 month period, and identify factors that predict successful adaptation in families. Method/Design The current study described is of a prospective, longitudinal design. The sample included parents of children admitted to four major hospital departments at the Royal Children’s Hospital, Melbourne, Australia, for a life threatening illness or injury. Eligible parents were those who were caregivers of children aged 0-to 18-years admitted to the Oncology, Cardiology, Neurology and Pediatric Intensive Care Unit. Parents were recruited acutely, and completed self-report questionnaires at four time-points: within the first 4 weeks (T1:); then at 4 months (T2); 7 months (T3); and 19 months (T4) after admission. Questionnaires assessed parent and child mental health and wellbeing, and a number of risk and reliance factors such child illness factors, parent demographic factors, and psychosocial factors. Discussion This study is one of the first to document the trajectory of post-traumatic stress responses in parents of very ill children, across illness groups. Given that it will also identify risk and resilience factors, and map the course of parent outcomes over an 18 monthperiod, it has the potential to inform novel strategies for intervention.

Childhood traumatic brain injury (CTBI) is one of the most common causes of impairment in children and adolescents, with psychosocial difficulties found to be the most persisting. Given that the transition into adolescence and adulthood can be a stressful period, it is likely that young people who have sustained a CTBI will be more vulnerable to developing psychosocial problems. To date, most research has focused on psychosocial development up to five years following a CTBI and it is unclear how survivors develop in the long-term as young adults. The aim of this research was to track the long-term psychosocial outcomes of children with CTBI and compare them with healthy controls over a period of 16 years. Seventy-five participants with a CTBI and 29 control participants were followed up at five time-points over a period of 16 years. To measure psychosocial functioning (social skills, internalizing, and externalizing symptoms), questionnaires were completed by the primary caregiver acutely (pre-injury baseline), then six months, five years, 10 years, and 16 years post-injury. No significant group differences were found regarding the developmental trajectory of social skills, or internalizing and externalizing symptoms between the CTBI and control groups. The severe CTBI group demonstrated a trend of lower social skills, while the mild CTBI group showed a trend of higher internalizing and externalizing skills at six months, five years, and ten years post-CTBI event, compared with other groups. The mild CTBI group scored in the borderline range for externalizing symptoms six months post-CTBI; however, all other mean scores were within the normal range. Over a period of 16 years, young adults with CTBI showed similar developmental trajectories regarding psychosocial outcomes, compared with healthy controls. This study confirmed previous literature that CTBI is associated with increased levels of psychosocial problems.

Research in contextParents of children with life threatening illness or injuries are at elevated risk of distress reactions, involving symptoms of acute stress disorder, depression and anxiety. Currently, the impact of child illness factors is unclear, and to date research systematically examining the prevalence of these psychological reactions across different illness groups with an acute life threat is sparse. This is important to explore given that studies show that parent functioning impacts on the psychological adjustment and recovery of the ill child.What does this study add?At four weeks following a child's diagnosis of a serious illness, 49–54% of parents met DSM-IV criteria for acute stress disorder, across a number of illness groups, whereas 15–27% of parents were in the moderate/severe range for depression and anxiety, and 25–31% for stress. Results from this study demonstrate that rates and severity of these psychological reactions in parents of seriously ill children do not vary according to illness type.BackgroundA life threatening childhood illness/injury can lead to significant distress reactions in parents, with independent studies finding such reactions in several different illness groups. To date, there is limited research systematically comparing the prevalence of adverse parental psychological reactions across different childhood illness groups with an acute life threat. This study aimed to investigate the frequency and severity of symptoms of acute traumatic stress, depression, anxiety and general stress in parents, following admission of their child to hospital for a life threatening illness. The study also aimed to explore the relationship between these symptoms, and to determine whether they differ according to illness/injury.MethodsCross-sectional data from a prospective, longitudinal study are reported. Participants were 194 parents of 145 children (49 couples), admitted to cardiology (n = 53), oncology (n = 40) and pediatric intensive care units (n = 52), for serious illnesses/injuries. Parents completed self-report questionnaires within four weeks of hospital admission.ResultsRates of acute traumatic stress (P = 0.262), depression (P = 0.525), anxiety (P = 0.453) and general stress symptoms (P = 0.720) in parents were comparable across illness type, with 49–54% reaching criteria for acute stress disorder, 15–27% having clinical levels of depression and anxiety, and 25–31% for general stress. Anxiety was most strongly associated with acute traumatic stress (r = 0.56), closely followed by stress (r = 0.52) and depression (r = 0.49), with all correlations highly significant (P < 0.001).ConclusionsThese findings provide evidence that the child's medical condition is not associated with parents’ experience of clinically significant psychological symptoms, and emphasize the importance for health care providers to be aware of these potential psychological reactions in parents, regardless of the type of illness.

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.

Background: Following TBI in childhood it is common for deficits to be seen in higher order skills, such as executive functions, both in the acute and longer-term post-injury. Despite this, very little evaluative research has been conducted with children post-TBI, particularly in the area of EF.Methods: The current study aimed to develop and implement a pilot intervention programme for adolescent/young adults (n = 3), in the chronic phase of recovery, when EF skills are no longer in a rapid state of development.Results and conclusions: Study results highlight the importance and need for accurate and relevant outcome measures that capture subtle as well as more obvious changes following intervention.

Given that reading, spelling and arithmetic skills are acquired through childhood, their development may be compromised following a childhood traumatic brain injury (TBI). The present study examined educational skills (reading accuracy, spelling and arithmetic) at a mean follow-up interval of 6.8 years post-injury in children who had sustained a mild, moderate, or severe TBI at two ages: 'Young' (age at injury: 3-7 years, n = 48) and 'Old': (age at injury: 8-12 years, n = 36). Comparisons between the young and old TBI groups resulted in inconsistent findings. While a dose-response relationship for severity was evident for the young group, this was not always the case for the old group. Significant predictors of outcome included both severity and acute intellectual function.