Involvement of children and young people in the conduct of health research: A rapid umbrella review.

BACKGROUND: Patient and public involvement and engagement (PPIE) have long been considered important to good research practice. There is growing, yet diverse, evidence in support of PPIE with children and young people (CYP). We must now understand the various approaches to involvement of CYP in research. AIMS: This rapid umbrella review aimed to provide an overview of when, how and to what extent CYP are involved in the conduct of health research, as well as the reported benefits, challenges, and facilitators of involvement. METHODS: We searched OVID Medline, Embase and PubMed. Published reviews were included if they reported meaningful involvement of CYP in the conduct of health research. Extracted data were synthesised using thematic analysis. RESULTS: The 26 reviews included were predominately systematic and scoping reviews, published within the last decade, and originating from North America and the United Kingdom. CYPs were involved in all stages of research across the literature, most commonly during research design and data collection, and rarely during research funding or data sharing and access. Researchers mostly engaged CYP using focus groups, interviews, advisory panels, questionnaires, and to a lesser extent arts-based approaches such as photovoice and drawing. Visual and active creative methods were more commonly used with children ≤12 years. The evidence showed a shared understanding of the benefits, challenges, and facilitators for involvement of CYP, such as time and resource commitment and building partnership. CONCLUSION: Overall, the review identified consistency in the range of methods and approaches used, and stages of research with which CYP are commonly involved. There is a need for more consistent reporting of PPIE in the literature, both in terminology and detail used. Furthermore, the impact of approaches to CYP involvement on research and community outcomes must be better evaluated. PATIENT/PUBLIC CONTRIBUTION: This review forms part of broader research initiatives being led by the authors. Together, these projects aim to support embedding of child voices in research practice and to explore the desirability and suitability of Young Persons Advisory Groups within birth cohort studies. The findings from this review, alongside public and stakeholder consultation, will inform development of resources such as practice recommendations to guide future involvement of CYP in health research undertaken at the author's respective institutions.

Deep phenotyping of socio-emotional skills in children with typical development, neurodevelopmental disorders, and mental health conditions: Evidence from the PEERS.

OBJECTIVE: Socio-emotional skills, including social competence and social cognition, form the basis for robust relationships and wellbeing. Despite their importance, these skills are poorly defined and measured, particularly in children with developmental vulnerabilities. As a consequence, targets for effective management and treatment remain unclear. We aimed to i) phenotype social competence and social cognition in typically developing children (TDC) and in children with neurodevelopmental or mental health disorders (clinical groups) and ii) establish the relationships between these child-direct measures and parent ratings of social competence and behavior. METHOD: Using a multi-site, cross-sectional study design, we recruited 513 TDC and 136 children with neurodevelopmental (autism spectrum disorder [ASD], attention deficit hyperactivity disorder [ADHD]) or mental health (Anxiety Disorder [ANX]) diagnoses (age range 5-15 years). We administered the Paediatric Evaluation of Emotions, Relationships and Socialisation (PEERS) to children, and parents completed standardised questionnaires rating children's socio-emotional function. RESULTS: Standardised parent questionnaires revealed a global pattern of everyday socio-emotional impairment that was common to all clinical groups, while PEERS identified disorder-specific socio-cognitive profiles for children with ASD, ADHD and ANX. Compared to TDCs, children with ASD demonstrated global socio-cognitive impairment. Children with ADHD were impulsive, demonstrating difficulties managing speed accuracy trade-offs. Children with ANX exhibited slowed social decision-making, but otherwise intact skills. CONCLUSIONS: Standardized parent questionnaires of child socio-emotional function reveal differences between children with typical and atypical development, but do not yield disorder-specific, socio-emotional profiles. In contrast, findings from the PEERS objective assessment suggest that that ASD, ADHD and ANX are associated with distinct socio-cognitive phenotypes, to more accurately guide and target management and treatment of impaired social competence.

Fronto-parietal white matter microstructure associated with working memory performance in children with ADHD.

INTRODUCTION: Attention Deficit/Hyperactivity Disorder (ADHD) is a neurodevelopmental disorder with many functional impairments thought to be underpinned by difficulties in executive function domains such as working memory. The superior longitudinal fasciculus (SLF) plays an integral role in the development of working memory in neurotypical children. Neuroimaging research suggests reduced white matter organization of the SLF may contribute to working memory difficulties commonly seen in ADHD. This study aimed to examine the relationship between white matter organization of the SLF and working memory in children with ADHD. METHODS: We examined the association of tract volume and apparent fibre density (AFD) of the SLF with working memory in children with ADHD (n = 64) and controls (n = 58) aged 9-11years. Children completed a computerized spatial n-back task and underwent diffusion magnetic resonance imaging (dMRI). Constrained spherical deconvolution-based tractography was used to construct the three branches of the SLF bilaterally and examine volume and AFD of the SLF. RESULTS: Regression analyses revealed children with ADHD exhibited poorer working memory, and lower volume and AFD of the left SLF-II compared to healthy controls. There was also an association between reaction time and variability (RT and RT-V) and the left SLF-II. Further analyses revealed volume of the left SLF-II mediated the relationship between ADHD and working memory performance (RT and RT-V). DISCUSSION: These findings add to the current body of ADHD literature, revealing the potential role of frontoparietal white matter in working memory difficulties in ADHD.

Supporting children's mental health in primary schools: a qualitative exploration of educator perspectives.

Schools are often seen as a key setting for the provision of mental health support for children. This study aimed to explore the professional perspectives of primary school educators in Victoria, Australia, regarding how schools can support the mental health of their students. Semi-structured interviews and focus groups were conducted with 17 primary school educators, from four schools. Thematic analysis was used to generate themes from the data. This study indicates that educators report significant concerns about the complexities of their role and their capacity to support children's mental health due to a lack of resources, overwhelming demands, and inadequate training. Educators highlighted the importance of partnership and communication with families and of a school culture that prioritises mental health. This study provides insights into external factors that can undermine effective support of children's mental health within primary schools and indicates a need for a more integrated approach to supporting children's mental health across education and healthcare.

Behavioral Intervention for Social Challenges in Children and Adolescents: A Systematic Review and Meta-analysis.

Importance: Social deficits are a common and disabling feature of many pediatric disorders; however, whether behavioral interventions are associated with benefits for children and adolescents with social deficits is poorly understood. Objective: To assess whether behavioral interventions in children and adolescents with neurodevelopmental or mental health disorders are associated with improvements in social function and social cognition, and whether patient, intervention, and methodological characteristics moderate the association. Data Sources: For this systematic review and meta-analysis, the PsycINFO, MEDLINE, and PubMed electronic databases were searched in December 2020 for randomized clinical trials published from database inception to December 1, 2020, including terms related to neurodevelopmental or mental health disorders, social behavior, randomized clinical trials, and children and adolescents. Data were analyzed in January 2021. Study Selection: Randomized clinical trials that enrolled participants aged 4 to 17 years with social deficits and examined the efficacy of a clinician-administered behavioral intervention targeting social functioning or social cognition were included. A total of 9314 records were identified, 78 full texts were assessed for eligibility, and 33 articles were included in the study; 31 of these reported social function outcomes and 12 reported social cognition outcomes. Data Extraction and Synthesis: Articles were reviewed using the Cochrane Risk of Bias Assessment for randomized clinical trials. Data were independently extracted and pooled using a weighted random-effects model. Main Outcomes and Measures: The main outcome was the association of behavioral intervention with social function and social cognition. Hedges g was used to measure the standardized mean difference between intervention and control groups. Standardized effect sizes were calculated for the intervention group vs the comparison group for each trial. Results: A total of 31 trials including 2131 participants (1711 [80%] male; 420 [20%] female; mean [SD] age, 10.8 [2.2] years) with neurodevelopmental or mental health disorders (autism spectrum disorder [ASD] [n = 23], attention-deficit/hyperactivity disorder [n = 4], other conditions associated with social deficits [n = 4]) were analyzed to examine differences in social function between the intervention and control groups. Significantly greater gains in social function were found among participants who received an intervention than among the control groups (Hedges g, 0.61; 95% CI, 0.40-0.83; P < .001). The type of control condition (wait list vs active control vs treatment as usual) was a significant moderator of effect size (Q2, 7.11; P = .03). Twelve studies including 487 individuals with ASD (48 [10%] female; 439 [90%] male; mean [SD] age, 10.4 [1.7] years) were analyzed to examine differences in social cognition between intervention and control groups. The overall mean weighted effect was significant (Hedges g, 0.67; 95% CI, 0.39-0.96; P < .001), indicating the treatment groups had better performance on social cognitive tasks. Conclusions and Relevance: In this systematic review and meta-analysis, significantly greater gains in social function and social cognition were reported among children and adolescents who received behavioral interventions for social deficits compared with participants receiving the control conditions. These findings suggest that children and adolescents with social deficits might benefit from social skills training regardless of their specific neurodevelopmental or mental health diagnosis.

What Makes for a Successful Digital Health Integrated Program of Work? Lessons Learnt and Recommendations From the Melbourne Children's Campus.

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.

Barriers and enablers faced by regional and rural schools in supporting student mental health: A mixed-methods systematic review.

BACKGROUND: Australian policy reports recommended schools to be leveraged to better support student mental health, with a focus on regional and rural areas where students have poorer mental health outcomes. In designing solutions to address this systemic gap, decision-makers require an understanding of the barriers and facilitators experienced by regional and rural schools. However, current literature has focused on metropolitan schools and neglected to explore facilitators. OBJECTIVE: To review the evidence on barriers and facilitators in delivering student mental health support experienced by regional and rural schools in Organisation for Economic Co-operation and Development nations. DESIGN: A mixed-methods systematic review of peer-reviewed and grey literature. FINDINGS: The search identified 4819 studies. A full-text review by 2 reviewers resulted in 5 papers, which met the inclusion criteria and were assessed using methodological appraisal. One study used qualitative data, 2 studies used quantitative data, and 2 studies were a mixed-methods design. DISCUSSION: While there was a paucity of studies, this review draws together the most up-to-date research. The barriers and facilitators were categorised into 3 themes: access to services and resources; mental health literacy of staff and parents; and communication and collaboration between stakeholders. CONCLUSION: This review presents a comprehensive synthesis of the literature and highlights opportunities to leverage rural and regional schools to support student mental health, focusing on the quality of communication and collaboration, and increasing access to services and resources, and mental health literacy. Research should explore the unique advantages of rural and regional areas to inform policy, including a focus on strengths.

Child concussion recognition and recovery: a community delivered, evidenced-based solution.

Pediatric concussion is a growing health concern. Concussion is generally poorly understood within the community. Many parents are unaware of the signs and varying symptoms of concussion. Despite the existence of concussion management and return to play guidelines, few parents are aware of how to manage their child's recovery and return to activities. Digital health technology can improve the way this information is communicated to the community. A multidisciplinary team of pediatric concussion researchers and clinicians translated evidence-based, gold-standard guidelines and tools into a smartphone application with recognition and recovery components. HeadCheck is a community facing digital health application developed in Australia (not associated with HeadCheck Health) for management of concussion in children aged 5-18 years. The application consists of (I) a sideline concussion check and (II) symptom monitoring and symptom-targeted psychoeducation to assist the parent manage their child's safe return to school, exercise and sport. The application was tested with target end users as part of the development process. HeadCheck provides an accessible platform for disseminating best practice evidence. It provides feedback to help recognize a concussion and symptoms of more serious injuries and assists parents guide their child's recovery.

Cognitive resilience following paediatric stroke: Biological and environmental predictors.

Little is known about resilience after paediatric stroke (PS), or the factors that contribute to better outcomes. Rather, research emphasis has been on impairment, measured through cross-sectional or retrospective designs, often heavily weighted to children presenting for clinical or rehabilitation follow-up. Implementing a resilience framework, this study aimed to investigate cognitive recovery post-stroke and factors that contribute to cognitive resilience at 12 months following PS. In a single site, prospective, longitudinal study (baseline, 1, 6, 12 months post-stroke), 61 children (55.7% male) aged 0-18 years, with a diagnosis of acute arterial ischemic stroke were recruited. Neurological status, lesion and child characteristics were collected at diagnosis. Cognitive, language and motor skills were assessed directly using age-appropriate, standardised tools. Parents rated their mental health, and child social and adaptive abilities. Participants were classified as 'resilient' (74%) or 'vulnerable' based on 12-month cognitive scores. The resilient group demonstrated more intact acute neurological status and higher language and adaptive abilities 1-month post-stroke; 88% of the vulnerable group had strokes involving both cortical and subcortical regions. Neonatal stroke, large lesions, cortical-only lesions, and middle cerebral artery involvement were associated with poorer cognition over the 12 months post-stroke. Absence of seizures and older age at stroke predicted better cognitive outcomes. In summary, most children surviving PS are cognitively resilient at 12 months post-insult. Risk and protective factors identified may guide targeted clinical intervention for more vulnerable children. Future research is needed to explore cognitive resilience trajectories beyond 12 months post-stroke.

Psychological trajectories of mothers and fathers following their child's diagnosis of a life-threatening illness or injury: A longitudinal investigation.

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.

Brain morphology and information processing at the completion of chemotherapy-only treatment for pediatric acute lymphoblastic leukemia.

Background: Approximately 50% of survivors of childhood acute lymphoblastic leukemia (ALL) demonstrate cognitive impairments. However, the trajectory of change and contributing neuropathology is unclear, limiting our ability to tailor intervention content and timing. This study aimed to explore information processing abilities and brain morphology early post-treatment for pediatric ALL. Procedure: Twenty-one children at the end of ALL treatment and 18 controls underwent neuropsychological assessment. A subset also completed structural magnetic resonance imaging. Results: A principal component analysis generated two cognitive factors: information processing capacity and information processing speed. Compared to control group, the ALL group displayed deficits in capacity, but not speed. No group differences were identified in morphology. No relationship was identified between capacity or speed and morphology. Conclusion: Early cognitive intervention should target information processing abilities using a system-wide approach. Future studies should employ alternative imaging techniques sensitive to white-matter microstructure when exploring pathology underlying information processing deficits.

Featured Article: Trajectories of Posttraumatic Stress Symptoms in Parents of Children With a Serious Childhood Illness or Injury.

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.

White Matter Microstructure and Information Processing at the Completion of Chemotherapy-Only Treatment for Pediatric Acute Lymphoblastic Leukemia.

Little is known about white matter microstructure and its role in information processing abilities of children treated for acute lymphoblastic leukemia (ALL) early posttreatment. Twenty-one survivors of ALL and 18 controls (7-16 years) underwent neurocognitive assessment. A subsample underwent diffusion-weighted magnetic resonance imaging. The ALL group performed poorer on measures of processing capacity, and had widespread areas of decreased fractional anisotropy and increased radial diffusivity. Significant group by white matter microstructure interactions was found when predicting processing speed. Findings provide evidence for an atypical brain-behavior relationship early posttreatment for childhood ALL. Replication in a larger sample is required.

Protocol for a prospective, school-based standardisation study of a digital social skills assessment tool for children: The Paediatric Evaluation of Emotions, Relationships, and Socialisation (PEERS) study.

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.