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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.

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PURPOSE: The lifelong impact of Hirschsprung disease (HD) upon children and their families is increasingly well recognized. Parental psychosocial wellbeing and family functioning are determinants of psychological and health-related outcomes in children with chronic conditions. We performed a cross-sectional cohort study to evaluate the psychosocial functioning of parents/caregivers of children with HD, beyond early childhood. METHODS: Parents/caregivers of children with HD, aged 4-14 years, managed at a tertiary pediatric surgical center were surveyed. Parent psychosocial outcomes, including adjustment to illness and family response, were assessed using four validated measures: Family Management Measure (FaMM); Parent Experience of Child Illness (PECI); Patient Reported Outcomes Measurement Information System (PROMISR) anxiety; and PROMISR depression. The Pediatric Quality of Life Inventory (PedsQL) was administered to assess child quality of life (proxy-report). RESULTS: Forty parents (mean age 38.7 ± 5.6 years) of children with HD (mean age 8.0 ± 2.5) participated. Parents expressed greater long-term uncertainty (PECI) and poorer perceived condition management ability (FaMM) than comparator chronic disease cohorts. Other scores for parental adjustment to their child's condition (PECI) and family response (FaMM) were comparable to reference cohorts. Symptoms of anxiety and depression were prevalent in our cohort (52.5 % and 42.5 % respectively); however, the proportion with moderate - severe PROMISR anxiety (χ2 = 2.50, p = 0.114) and depression (χ2 = 0.156, p = 0.693) scores did not significantly differ from the expected population distribution. Proxy-reported child quality of life (PedsQL) was significantly reduced relative to healthy children (p = 0.0003), but comparable to those with physical health problems with special healthcare needs (p = 0.624). CONCLUSIONS: Parents of children with HD experience long-term uncertainty and have poorer perceived condition management ability than parents of children with other chronic childhood illnesses. This work highlights the importance of targeted parental education and support beyond primary surgical management, and provides a benchmark for this cohort, against which subsequent intervention-based studies may be assessed. LEVEL OF EVIDENCE: II.

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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.

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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: The role of professionals; The role of the young person; and The role of the parents. Working as a team: Understanding each other and building trust; Communicating, sharing knowledge and different perspectives; and Being flexible. These themes reflect parent's and young people's experience of goal setting during paediatric rehabilitation for ABI and suggest clinicians play an important role in educating young people and their families about goal setting in the outpatient rehabilitation context. Young people and their parents also perceive the focus of outpatient rehabilitation as working collaboratively with clinicians to gain knowledge to manage the consequences of ABI. Our findings emphasize the importance of the therapeutic consumer-clinician relationship and the need to actively engage young people in goal setting.

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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.

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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.

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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.

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Embedding digital technologies in healthcare has the potential to streamline and personalize medical care. However, healthcare systems are often fragmented, and therefore achieving a truly integrated digital health program can be challenging. To promote a streamlined, evidence-based approach to implementing digital health solutions in a healthcare system, the Murdoch Children's Research Institute (MCRI) established the Digital Health Translation and Implementation Program (DHTI) bringing together clinicians, researchers and digital health experts. From the program commencement, frontline clinical innovators have collaborated with DHTI team members to develop and implement digital solutions to address pain-points in the healthcare system. Throughout this program, important lessons have been learnt relating to the development, evaluation and implementation of digital solutions in the healthcare system. This paper explores these lessons and makes recommendations for the successful implementation of digital health solutions in healthcare systems under five main categories: (1) design and usability, (2) stakeholder engagement and uptake, (3) project management and resourcing, (4) process and implementation, and (5) evaluation. Recommendations suggested here are designed to support future healthcare-based digital health programs to maximize the impact digital solutions can have on the healthcare system and patients.

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OBJECTIVE: To investigate the quality of life (QoL) impact on primary caregivers of children with esophageal atresia. STUDY DESIGN: We used a prospective cohort study design, inviting primary caregivers of children with esophageal atresia to complete the following questionnaires: Parent Experience of Child Illness (PECI), Patient-Reported Outcomes Measurement Information System (PROMIS) Anxiety, PROMIS Depression, 12-Item Short Form Survey (SF-12), and Pediatric Quality of Life Inventory (PedsQL). The PECI, PROMIS Anxiety and Depression, and SF-12 assessed caregiver QoL, and the PedsQL assessed patient QoL. Patients with Gross type E esophageal atresia served as controls. RESULTS: The primary caregivers of 100 patients (64 males, 36 females; median age, 4.6 years; range, 3.5 months to 19.0 years) completed questionnaires. The majority (76 of 100) of patients had Gross type C esophageal atresia. A VACTERL (vertebral anomalies, anorectal malformation, cardiac anomalies, tracheoesophageal fistula, renal anomalies, limb anomalies) association was found in 30, ≥1 esophageal dilatation was performed in 57, and fundoplication was performed in 11/100. When stratified by esophageal atresia types, significant differences were found in 2 PECI subscales (unresolved sorrow/anger, P = .02; uncertainty, P = .02), in PROMIS Anxiety (P = .02), and in SF-12 mental health (P = .02) and mental component summary scores (P = .02). No significant differences were found for VACTERL association, nor esophageal dilatation. Requirement for fundoplication resulted in lower SF-12 general health score, and lower PedsQL social and physical functioning scores. CONCLUSIONS: We have demonstrated that caring for a child with esophageal atresia and a previous requirement for fundoplication impacts caregiver QoL.

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PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

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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.

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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 (Cohen d = 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.

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PURPOSE: 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. METHODS: 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. RESULTS: 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 < 0.01) and in all eight AQoL-8D dimensions, except for senses and self-worth. No significant differences were observed across illness groups. Parental HSUVs were associated with psychosocial risk factors of trait anxiety (p < 0.001), depression (p < 0.001) and family beliefs (p = 0.024). CONCLUSION: Having a child with a severe illness has an impact on the psychosocial aspects of parental HRQoL regardless of the type of illness. Psychosocial health factors of trait anxiety, depression and family beliefs were important predictors of parental HSUV.

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BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

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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.

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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.

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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.

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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.

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Objective: Serious childhood illness is associated with significant parent psychological distress. This study aimed to (a) document acute and posttraumatic stress symptoms (PTSS) in parents of children with various life-threatening illnesses; (b) identify trajectory patterns of parental PTSS and recovery over 18 months; (c) determine psychosocial, demographic, and illness factors associated with trajectory group membership. Methods: In total, 159 parents (115 mothers, 44 fathers) from 122 families participated in a prospective, longitudinal study that assessed parent psychological responses across four time points-at diagnosis, and 3, 6, and 18 months later. Children were admitted to the Cardiology, Oncology, and Pediatric Intensive Care Departments in a tertiary pediatric hospital. The primary outcome was parent PTSS. Results: Three distinct parent recovery profiles were identified-"Resilient," "Recovery," and "Chronic." The "Resilient" class (33%) showed low distress responses across the trajectory period, whereas the "Recovery" class (52%) showed significantly higher levels of distress at the time of diagnosis that gradually declined over the first months following their child's illness. Both of these classes nevertheless remained within the normative range throughout. In contrast, the "Chronic" class (13%) was consistently high in severity, remaining within the clinical range across the entire period. Psychosocial factors such as mood, anxiety, and emotional responses predicted group membership, whereas demographic and illness factors did not. Conclusions: Parents show considerable resilience in the face of children's life-threatening illnesses. Early assessment of parent psychosocial factors may aid identification of those who would benefit from early intervention.

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BACKGROUND: Humans 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. METHODS: The 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 DISSEMINATION: Ethics 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.

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