Moving from idea to reality: The barriers and enablers to implementing Child and Family Hubs policy into practice in NSW, Australia.

BACKGROUND: Adverse childhood experiences can impact physical and mental health throughout the lifespan. To support families experiencing adversity and improve child health and developmental equity, an integrated, multi-sector response is required. Child and Family Hubs (Hubs) are a feasible and acceptable approach to providing such a response. In the Australian context, a number of federal and New South Wales (NSW) state policies support an integrated, multi-sector response using Hubs to support families experiencing adversity. This study examined NSW policy stakeholder and health service manager perspectives on the barriers and enablers to translating policy into practice in the implementation of Child and Family Hubs. METHODS: Semi-structured interviews were conducted with 11 NSW government policy stakeholders and 13 community health service managers working in child and family policy and planning or child and family community-based services. Interviews were of 30-60 min duration and explored stakeholder knowledge, perspectives and experiences around childhood adversity, and barriers and enablers to operationalizing policies supporting Hubs. Analysis of barriers and facilitators to implementation of Hub models of care was undertaken using the Consolidated Framework for Implementation Research (CFIR). RESULTS: Key barriers that emerged included short-term and inconsistent funding, lack of resourcing for a Hub co-ordinator, limited support for evaluation and insufficient time to plan for Hub implementation. Key enablers included flexibility and adaptability of Hub models to meet local needs, formal change management processes, strong governance structures and engagement among Hub practitioners. Key insights included the importance of targeted strategies to support sustained individual practice change and the need for organization-wide commitment to enable the successful adoption and maintenance of the Hub model of care. CONCLUSIONS: This study provides valuable insights and contributes evidence around what is needed to strengthen and support the operationalization and scalability of the Hub model of care. Key recommendations for Hub practitioners include the importance of formal change management processes and establishment of strong governance structures, while key recommendations for policymakers include the need for sustainable Hub funding and a standardized, evidence-based framework to support Hub implementation and evaluation.

EPIC-CP pilot trial study protocol: a multicentre, randomised controlled trial investigating the feasibility and acceptability of social prescribing for Australian children with cerebral palsy.

INTRODUCTION: The social determinants of health contribute to poorer health outcomes for children with cerebral palsy (CP) and are barriers to families accessing health services. At an individual level, social determinants of health are experienced as unmet social needs, for example, unsafe housing conditions. There is emerging evidence that clinical pathways for the systematic identification and referral to services for unmet social needs can support families to address these needs. These clinical pathways have not been implemented for children with CP. The objectives are to investigate the feasibility and acceptability of two co-designed social needs clinical pathways for parents/caregivers of children with CP-social prescribing (ie, Community Linker plus resource pack) compared with resource pack only. METHODS AND ANALYSIS: This pilot randomised controlled trial will run at the three tertiary paediatric rehabilitation services in New South Wales, Australia. A total of 120 participants will be recruited, with randomisation stratified by study site. A survey tool will be used to identify families experiencing unmet social needs. Parents/caregivers who report one or more unmet social need/s and consent will be eligible. The active control group will receive a resource pack containing information on community services to support unmet social needs. The social prescribing intervention group will receive one-on-one Community Linker support, in addition to the resource pack. The survey tool, intervention, logic model, and resource pack were co-designed with patient families and their healthcare workers. Feasibility of the research design and the clinical pathways will be evaluated using the number/proportion of parents/caregivers who complete the survey tool, consent, engage with the intervention, and complete research measures. Acceptability will be evaluated using questionnaires and qualitative interviews. ETHICS AND DISSEMINATION: Human research ethics approval was granted by the Sydney Children's Hospitals Network Human Research Ethics Committee (2022/ETH01688). Participants and stakeholders will receive updates and findings via regular communication channels including meetings, presentations, and publications. TRIAL REGISTRATION NUMBER: Australia New Zealand Clinical Trials Registry: 12622001459718.

Quality of Life and Well-Being in Adults With Fontan Physiology: Findings From the Australian and New Zealand Fontan Registry Quality of Life Study.

BACKGROUND: To characterize global and health-related quality of life (QOL) among adults with Fontan physiology enrolled in the Australian and New Zealand Fontan Registry (ANZFR), and identify sociodemographic, clinical, psychological, and relational factors associated with outcomes. METHODS AND RESULTS: Using a cross-sectional survey design, 66 adults with Fontan physiology (58% women; mean age, 29.6±7.7 years; range, 18-50 years) completed validated self-report measures. Health-related QOL was assessed using the Pediatric Quality of Life Inventory, and global QOL was assessed using a visual analog scale (0-10). Participants reported lower total health-related QOL (P<0.001), as well as lower physical (P<0.001) and social (P=0.002) functioning compared with normative data. Median global QOL was 7.0 (interquartile range: 5.0-8.0) and most participants (71%) rated their QOL ≥6. For health-related QOL, age, sex, university education, and length of hospital stay in the past 12 months explained 27% of the variance in scores, while general psychological stress, medical traumatic stress, communication problems, and access to emotional support explained a further 44% of variance (final model: 71% of variance explained). For global QOL, sociodemographic and clinical factors explained 20% of the variance in scores, while psychological stress and sense of coherence explained a further 24% (final model: 44% of variance explained). CONCLUSIONS: Adults with Fontan physiology reported lower overall health-related QOL compared with community-based norms. Variance in QOL outcomes were predominantly attributable to psychological and relational factors. Tailored screening and assessment to identify Fontan patients at greatest risk of lower QOL, and a proactive approach to supportive care, are needed.

Wellbeing in Children and Adolescents with Fontan Physiology.

OBJECTIVE: To assess health-related quality of life (HRQOL) and global quality of life (QOL) in children and adolescents with Fontan physiology and identify key predictors influencing these outcomes. STUDY DESIGN: Cross-sectional analysis of 73 children and adolescents enrolled in the Australia and New Zealand Fontan Registry aged 6-17 years, at least 12 months post-Fontan operation. Assessments included the Pediatric Quality of Life Inventory (PedsQL) for HRQOL and a developmentally-tailored visual analogue scale (0-10) for global QOL, along with validated sociodemographic, clinical, psychological, relational, and parental measures. Clinical data were provided by the Australia and New Zealand Fontan Registry. RESULTS: Participants (mean age: 11.5 ± 2.6 years, 62% male) reported lower overall HRQOL (P < .001), and lower scores across all HRQOL domains (all P < .0001), compared with normative data. Median global QOL score was 7.0 (IQR 5.8-8.0), with most participants (79%) rating their global QOL ≥6. Anxiety and depressive symptoms requiring clinical assessment were reported by 21% and 26% of participants, respectively. Age, sex, and perceived seriousness of congenital heart disease explained 15% of the variation in HRQOL scores, while depressive symptoms and treatment-related anxiety explained an additional 37% (final model: 52% of variance explained). For global QOL, sociodemographic and clinical factors explained 13% of the variance in scores, while depressive symptoms explained a further 25% (final model: 38% of variance explained). Parental factors were not associated with child QOL outcomes. CONCLUSIONS: Children and adolescents with Fontan physiology experience lower HRQOL than community-based norms, despite reporting fair overall QOL. Psychological factors predominantly influenced QOL outcomes, indicating strategies to bolster psychological health could improve QOL in this population.

Difficult Toddler Temperament - Prevalence and Associated Factors at 18-Month Follow-Up of a Birth Cohort.

Purpose: Difficult temperament coupled with other risk factors may lead to mental health problems in childhood and have long-lasting effects in adolescence and adulthood. This study aimed to investigate the prevalence of parental perception of difficult temperament in toddlers and identify significant factors associated with individual and family-level sociodemographic risk factors. Patients and Methods: The prevalence of parental perception of difficult temperament was derived from items in the 18-month follow-up questionnaire within the Watch Me Grow (WMG) longitudinal birth cohort study in a multicultural and socioeconomically disadvantaged community in Sydney, Australia. Data was available for 500 children and their parents. Descriptive analysis was used to calculate the participant characteristics and the prevalence of parental perception of difficult temperament, whereas multivariable logistic regression analysis was used to assess significant risk factors associated with a difficult temperament. Results: Parental perception of difficult temperament in the cohort was 7.3% (n = 492). Findings of the multivariable logistic regression showed that screen time >2 hours a day (AOR 2.43, 95% CI: 1.2, 4.9), child not being read to (AOR 3.92, 95% CI: 1.8, 8.5), and family history of mental health problems (AOR 2.69, 95% CI: 1.1, 6.5) significantly increased the odds of having a difficult temperament. Conclusion: Toddlers with difficult temperament were less likely to have received stimulatory experiences, and their families were more likely to be under greater stress. The findings emphasize the importance of parental support and anticipatory guidance in promoting nurturing care to facilitate child health and development, particularly in disadvantaged communities.

New consensus definition on defining and measuring care for children with paediatric feeding disorder.

AIM: This study addresses the absence of a definition of care for children with feeding disorders, limited agreement on key performance indicators (KPIs), and the lack of data linked to those KPIs. METHODS: Clinicians, consumers and researchers involved in outpatient feeding care in New South Wales (NSW), Australia were invited to participate in a two-Phase study. In Phase 1, a modified Delphi method was used. Two rounds of voting resulted in a new consensus definition of a multidisciplinary paediatric feeding clinic. Three further rounds voting determined relevant KPIs. In Phase 2, the KPIs were piloted prospectively in 10 clinics. RESULTS: Twenty-six clinicians, consumers and researchers participated in Phase 1. Participation across five voting rounds declined from 92% to 60% and a valid definition and KPI set were created. In Phase 2, the definition and KPIs were piloted in 10 clinics over 6 weeks. Data for 110 patients were collected. The final KPI set of 28 measures proposed covers clinical features, patient demographics and medical issues, parent-child interaction and outcome measures. CONCLUSIONS: A new definition of a multidisciplinary paediatric feeding clinic is now available, linked to a standardised KPI set covering relevant performance measures. These proved viable in baseline data collection for 10 clinics across NSW. This sets a foundation for further data collection, systematic measurement of care provision and outcomes, and research needed to deliver care improvement for children with paediatric feeding disorder.

Ngaramadhi Space: An Integrated, Multisector Model of Care for Students Experiencing Problematic Externalising Behaviour.

Introduction: Behavioural and emotional disorders are a significant cause of morbidity for young people aged 10-19 years. School-based health care (SBHC) provides an innovative approach to addressing these issues within Australia. Description: We describe an innovative and integrative SBHC model called Ngaramadhi Space (NS) based at a specialised behavioural school called Yudi Gunyi school (YGS) in metropolitan Sydney, Australia. NS was developed in partnership with the Aboriginal community to provide holistic, integrated, multidisciplinary child and family centred care to students experiencing problematic externalising behaviour. We contextualise the historical factors leading to the development of NS, highlighting the importance of effective partnerships between sectors, and providing the theoretical framework and key components underpinning the model of care. Discussion: In Australia, schools are an under-utilised resource for the delivery of health and support alongside education. Collaboration between sectors can be challenging but allows a more coordinated approach to the management of complex social and health issues. By forming effective partnerships with schools and communities, the health sector has an opportunity to improve access to health and social care in a culturally safe and acceptable way. This is in line with national and international frameworks for improving health service delivery and addressing inequity. Conclusion: The health sector can play a pivotal role in improving the wellbeing of children by forming effective partnerships with schools and communities. The NS model is a practice-based example of this.

Feasibility of linking universal child and family healthcare and financial counselling: findings from the Australian Healthier Wealthier Families (HWF) mixed-methods study.

OBJECTIVES: 'Healthier Wealthier Families' (HWF) seeks to reduce financial hardship in the early years by embedding a referral pathway between Australia's universal child and family health (CFH) services and financial counselling. This pilot study investigated the feasibility and short-term impacts of HWF, adapted from a successful Scottish initiative. METHODS: Setting: CFH services in five sites across two states, coinciding with the COVID-19 pandemic. PARTICIPANTS: Caregivers of children aged 0-5 years experiencing financial hardship (study-designed screen). DESIGN: Mixed methods. With limited progress using a randomised trial (RCT) design in sites 1-3 (March 2020-November 2021), qualitative interviews with service providers identified implementation barriers including stigma, lack of knowledge of financial counselling, low financial literacy, research burden and pandemic disruption. This informed a simplified RCT protocol (site 4) and direct referral model (no randomisation, pre-post evaluation, site 5) (June 2021-May 2022). INTERVENTION: financial counselling; comparator: usual care (sites 1-4). Feasibility measures: proportions of caregivers screened, enrolled, followed up and who accessed financial counselling. Impact measures: finances (quantitative) and other (qualitative) to 6 months post-enrolment. RESULTS: 355/434 caregivers completed the screen (60%-100% across sites). In RCT sites (1-4), 79/365 (19%-41%) reported hardship but less than one-quarter enrolled. In site 5, n=66/69 (96%) caregivers reported hardship and 44/66 (67%) engaged with financial counselling; common issues were utility debts (73%), and obtaining entitlements (43%) or material aid/emergency relief (27%). Per family, financial counselling increased income from government entitlements by an average $A6504 annually plus $A784 from concessions, grants, brokerage and debt waivers. Caregivers described benefits (qualitative) including reduced stress, practical help, increased knowledge and empowerment. CONCLUSIONS: Financial hardship screening via CFH was acceptable to caregivers, direct referral was feasible, but individual randomisation was infeasible. Larger-scale implementation will require careful, staged adaptations where CFH populations and the intervention are well matched and low burden evaluation. TRIAL REGISTRATION NUMBER: ACTRN12620000154909.

Alpha NSW: What would it take to create a state-wide paediatric population-level learning health system?

BACKGROUND: The health and well-being of children in the first 2000 days has a lasting effect on educational achievement and long-term chronic disease in later life. However, the lack of integration between high-quality data, analytic capacity and timely health improvement initiatives means practitioners, service leaders and policymakers cannot use data effectively to plan and evaluate early intervention services and monitor high-level health outcomes. OBJECTIVE: Our exploratory study aimed to develop an in-depth understanding of the system and clinical requirements of a state-wide paediatric learning health system (LHS) that uses routinely collected data to not only identify where the inequities and variation in care are, but also to also inform service development and delivery where it is needed most. METHOD: Our approach included reviewing exemplars of how administrative data are used in Australia; consulting with clinical, policy and data stakeholders to determine their needs for a child health LHS; mapping the existing data points collected across the first 2000 days of a child's life and geospatially locating patterns of key indicators for child health needs. RESULTS: Our study identified the indicators that are available and accessible to inform service delivery and demonstrated the potential of using routinely collected administrative data to identify the gap between health needs and service availability. CONCLUSION: We recommend improving data collection, accessibility and integration to establish a state-wide LHS, whereby there is a streamlined process for data cleaning, analysis and visualisation to help identify populations in need in a timely manner.

Ear health and hearing in urban Aboriginal children.

OBJECTIVE: Evaluate ear health and hearing among urban Aboriginal children and quantify relationships with child, family and social factors. METHODS: Baseline questionnaire and ear health examinations from 1430 children with diagnoses (0.5-18 years) attending Aboriginal Health Services enrolled in SEARCH. Ear health outcomes were Otitis Media (OM), and hearing loss (three-frequency average hearing loss >20dB) diagnosed using pneumatic otoscopy, tympanometry, and audiometry. RESULTS: Half the children 0.5-3 years had OM (51.5%, 136/264). One third 0.5-18 years (30.4%; 435/1430) had OM, including 1.8% (26/1430) with perforation (0.8% chronic suppurative OM, 0.6% dry perforation and 0.4% acute OM with perforation). One quarter 0.5-18 years (25.7%; 279/1087) had hearing loss; 12.4% unilateral, 13.2% bilateral (70.6% with bilateral loss had concurrent OM). OM was associated with: younger age (0.5-<3 years versus 6-18 years) age-sex-site; adjusted prevalence ratio (aPR)=2.64, 95%, 2.18-3.19); attending childcare/preschool (aPR=1.24, 95%CI, 1.04-1.49); foster care (aPR=1.40, 95%CI, 1.10-1.79); previous ear infection/s (aPR=1.68, 95%CI, 1.42-1.98); and ≥2 people/bedroom (aPR=1.66, 95%CI, 1.24-2.21). Hearing impairment was associated with younger age (0.5-<6 years vs. ≥6 years aPR=1.89, 95%CI, 1.40-2.55) and previous ear infection (aPR=1.87, 95%CI, 1.31-2.68). CONCLUSIONS: Half the urban Aboriginal children in this cohort had OM and two-thirds with hearing impairment had OM. IMPLICATIONS FOR PUBLIC HEALTH: Findings highlight importance of early detection and support for ear health, particularly in pre-school-aged children with risk factors.

Prevalence and trends for Aboriginal and Torres Strait Islander children living with cerebral palsy: A birds-eye view.

AIM: To provide a birds-eye view of the trends of cerebral palsy (CP) for Australian Aboriginal and Torres Strait Islander children and young adults. METHOD: Data were obtained for this population-based observational study from the Australian Cerebral Palsy Register (ACPR), birth years 1995 to 2014. The Indigenous status of children was classified by maternal Aboriginal and Torres Strait Islander or non-Indigenous status. Descriptive statistics were calculated for socio-demographic and clinical characteristics. Prenatal/perinatal and post-neonatal birth prevalence was calculated per 1000 live births and per 10 000 live births respectively, and Poisson regression used to assess trends. RESULTS: Data from the ACPR were available for 514 Aboriginal and Torres Strait Islander individuals with CP. Most children could walk independently (56%) and lived in urban or regional areas (72%). One in five children lived in socioeconomically disadvantaged remote/very remote areas. The birth prevalence of prenatal/perinatal CP declined after the mid-2000s from a high of 4.8 (95% confidence interval 3.2-7.0) to 1.9 per 1000 live births (95% confidence interval 1.1-3.2) (2013-2014), with marked declines observed for term births and teenage mothers. INTERPRETATION: The birth prevalence of CP in Aboriginal and Torres Strait Islander children in Australia declined between the mid-2000s and 2013 to 2014. This birds-eye view provides key stakeholders with new knowledge to advocate for sustainable funding for accessible, culturally safe, antenatal and CP services. WHAT THIS PAPER ADDS: Birth prevalence of cerebral palsy (CP) is beginning to decline for Aboriginal and Torres Strait Islanders. Recent CP birth prevalence for Aboriginal and Torres Strait Islanders is 1.9 per 1000 live births. Most children with CP live in more populated areas rather than remote or very remote areas. One in five Aboriginal and Torres Strait Islander children with CP live in socioeconomically disadvantaged remote areas.

Codesigning a social prescribing pathway to address the social determinant of health concerns of children with cerebral palsy and their families in Australia: a protocol for a mixed-methods formative research study.

INTRODUCTION: Social determinants of health (SDH) are contributors to health inequities experienced by some children with cerebral palsy and pose barriers to families engaging with complex and fragmented healthcare systems. There is emerging evidence to support 'social prescribing' interventions that systematically identify SDH concerns and refer patients to non-medical social care support and services to address their needs. To date, social prescribing has not been trialled specifically for children with neurodevelopmental disabilities, including cerebral palsy, in Australia. This study aims to codesign a social prescribing programme to address SDH concerns of children with cerebral palsy and their families who attend one of the three tertiary paediatric rehabilitation services in New South Wales, Australia. METHODS AND ANALYSIS: This is a qualitative multi-site study conducted at the three NSW paediatric hospitals' rehabilitation departments using a codesign approach. Children aged 12-18 years with cerebral palsy, parents/caregivers of children (aged 0-18 years) with cerebral palsy, and clinicians will be involved in all stages to codesign the social prescribing programme. The study will consist of three components: (1) 'what we need', (2) 'creating the pathways' and (3) 'finalising and sign off'. This project is overseen by two advisory groups: one group of young adults with cerebral palsy and one group of parents of young people with cerebral palsy. The study will be guided by the biopsychosocial ecological framework, and analysis will follow Braun and Clark's thematic approach. ETHICS AND DISSEMINATION: The study protocol was approved by the human research ethics committee of the Sydney Children's Hospitals Network. This codesign study will inform a future pilot study of feasibility and acceptability, then if indicated, a pilot clinical trial of efficacy. We will collaborate with all project stakeholders to disseminate findings and undertake further research to build sustainable and scalable models of care. TRIAL REGISTRATION NUMBER: ACTRN12622001459718.

Clinical Pathways for the Identification and Referral for Social Needs: A Systematic Review.

CONTEXT: Recognition of the importance of the social determinants of child health has prompted increased interest in clinical pathways that identify and refer for social needs. OBJECTIVE: The aim of this systematic review was to determine the effectiveness of interventions that identify and refer for social needs for families with children aged 0 to 18 years attending outpatient community and ambulatory healthcare services. DATA SOURCES: We searched the following databases: Medline, Embase, PsychINFO, CINAHL, Emcare, EBMR. STUDY SELECTION: Studies were included if children and their families underwent a process of identification and referral for social needs in outpatient community and ambulatory healthcare services. DATA EXTRACTION: Initial searches identified 5490 titles, from which 18 studies (73 707 families and children) were finally retained. RESULTS: Intervention pathways were grouped into 3 categories based on whether identification and referral for social needs was conducted with only targeted community resources, a navigator, or with clinician training. The majority of studies reported positive outcomes; with an increase in social needs identification, an increase in referrals following identification, or a reduction in social needs. Child health outcome results were inconsistent. LIMITATIONS: The search terms used may have provided bias toward countries in which these terms are in use. The heterogeneity of outcome measures between included studies meant a meta-analysis was not possible. CONCLUSIONS: Despite evidence that clinical pathways for children and families help reduce social needs, evidence for improvements in child health is insufficient. Further studies from diverse settings are needed to inform clinical practice to optimize child health outcomes.

Temporal trends, clinical characteristics, and sociodemographic profile of post-neonatally acquired cerebral palsy in Australia, 1973-2012: A population-based observational study.

AIM: To describe post-neonatally acquired (PNN) cerebral palsy (CP) in terms of temporal trends in prevalence, clinical and sociodemographic profiles, known causes and associations between causes, and sociodemographic variables. METHOD: Numerator data, a count of children with PNN-CP confirmed at 5 years of age (n = 523), was drawn from two Australian state CP registers (birth years 1973-2012). Poisson regression was used to investigate temporal trends in the prevalence of PNN-CP by 5-year intervals, calculated per 10 000 live births. Using data from all state and territory Australian CP registers (n = 469), distributions of clinical characteristics, PNN-CP causes, and sociodemographic factors were tabulated (birth years 1995-2012). χ2 and logistic regression analyses were used to assess associations between sociodemographic profile, Australian reference data, and known causes. RESULTS: A significant temporal decline in PNN-CP in Victoria (p = 0.047) and Western Australia (p = 0.033) was observed. The most common proximal causes of PNN-CP were cerebrovascular accidents (34%, n = 158), infection (25%, n = 117), and non-accidental injuries (12%, n = 58). Children born to teenage mothers, Aboriginal and/or Torres Strait Islander mothers, or children born in remote areas were over-represented in this cohort compared with reference data (all p ≤ 0.001). Infectious causes were strongly associated with teenage motherhood (odds ratio 3.0 [95% confidence interval 1.1-8.2], p = 0.028) and remote living (odds ratio 4.5 [95% confidence interval 2.0-10.2], p < 0.001). INTERPRETATION: Although prevalence of PNN-CP has declined, the over-representation of priority populations, and the relative severity of a condition that is largely preventable, suggest the need for more specific primary preventive measures and support. WHAT THIS PAPER ADDS: Prevalence of post-neonatally acquired (PNN) cerebral palsy (CP) in Australia significantly declined between 1973 and 2012. Cerebrovascular accidents are the most common proximal cause of PNN-CP. Children born in remote areas are at greater risk of PNN-CP.

Multicountry review: developmental surveillance, assessment and care by outpatient paediatricians.

BACKGROUND: Care of young children with neurodevelopmental disorders (NDD) is a major component of paediatric outpatient practice. However, cross-country practice reviews to date have been limited, and available data demonstrate missed opportunities for early identification, particularly in vulnerable population subgroups. METHODS: Multicountry review of national paediatric body guidance related to developmental surveillance, early identification and early childhood intervention together with review of outpatient paediatrician practices for developmental assessment of children aged 0-5 years with/at risk of NDDs. Review included five countries with comparable nationalised universal child healthcare systems (ie, Australia, Canada, New Zealand, Sweden and the UK). Data were collected using a combination of published and grey literature review, supplemented by additional local sources with descriptive review of relevant data points. RESULTS: Countries had broadly similar systems for early identification of young children with NDDs alongside universal child health surveillance. However, variation existed in national paediatric guidance, paediatric developmental training and practice, including variable roles of paediatricians in developmental surveillance at primary care level. Data on coverage of developmental surveillance, content and quality of paediatric development assessment practices were notably lacking. CONCLUSION: Paediatricians play an important role in ensuring equitable access to early identification and intervention for young children with/at risk of NDDs. However, strengthening paediatric outpatient care of children with NDD requires clearer guidance across contexts; training that is responsive to shifting roles within interdisciplinary models of developmental assessment and improved data to enhance equity and quality of developmental assessment for children with/at risk of NDDs.

Developmental Screening Tools Used with First Nations Populations: A Systematic Review.

Developmental surveillance and screening is recommended for all children under five years of age, especially for those from at-risk populations such as First Nations children. No review to date has, however, evaluated the use of developmental screening tools with First Nations children. This review aimed to examine and synthesise the literature on developmental screening tools developed for, or used with, First Nations populations children aged five years or younger. A PRISMA-compliant systematic review was performed in the PsychInfo, PubMed, and Embase databases. Additional searches were also undertaken. In total 444 articles were identified and 13 were included in the final review. Findings indicated that several developmental screening tools have been administered with First Nations children. Most tools, however, have only been evaluated in one study. Results also found that no studies evaluated actions taken following positive screening results. More research evaluating the accuracy, acceptability, and feasibility of using developmental screeners with First Nations children is required before widespread implementation of developmental screening in clinical settings with First Nations children is recommended.

Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study.

OBJECTIVES: Implementing support and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental conditions including autism. This study examined parents'/caregivers' experiences and perceptions about a digital developmental surveillance pathway for autism, the autism surveillance pathway (ASP), and usual care, the surveillance as usual (SaU) pathway, in the primary healthcare general practice setting. DESIGN: This qualitative study involves using a convenience selection process of the full sample of parents/caregivers that participated in the main programme, 'General Practice Surveillance for Autism', a cluster-randomised controlled trial study. All interviews were audio-recorded, transcribed and coded using NVivo V.12 software. An inductive thematic interpretive approach was adopted and data were analysed thematically. PARTICIPANTS: Twelve parents/caregivers of children with or without a developmental condition/autism (who participated in the main programme) in South Western Sydney and Melbourne were interviewed. SETTINGS: All interviews were completed over the phone. RESULTS: There were seven major themes and 20 subthemes that included positive experiences, such as pre-existing patient-doctor relationships and their perceptions on the importance of knowing and accessing early support/services. Barriers or challenges experienced while using the SaU pathway included long waiting periods, poor communication and lack of action plans, complexity associated with navigating the healthcare system and lack of understanding by general practitioners (GPs). Common suggestions for improvement included greater awareness/education for parents/carers and the availability of accessible resources on child development for parents/caregivers. CONCLUSION: The findings support the use of digital screening tools for developmental surveillance, including for autism, using opportunistic contacts in the general practice setting. TRIAL REGISTRATION NUMBER: ANZCTR (ACTRN12619001200178).

Impact of integrated care coordination on pediatric asthma hospital presentations.

Introduction: Frequent asthma attacks in children result in unscheduled hospital presentations. Patient centered care coordination can reduce asthma hospital presentations. In 2016, The Sydney Children's Hospitals Network launched the Asthma Follow up Integrated Care Initiative with the aim to reduce pediatric asthma emergency department (ED) presentations by 50% through developing and testing an integrated model of care led by care coordinators (CCs). Methods: The integrated model of care was developed by a multidisciplinary team at Sydney Children's Hospital Randwick (SCH,R) and implemented in two phases: Phase I and Phase II. Children aged 2-16 years who presented ≥4 times to the ED of the SCH,R in the preceding 12 months were enrolled in Phase I and those who had ≥4 ED presentations and ≥1 hospital admissions with asthma attack were enrolled in Phase II. Phase I included a suite of interventions delivered by CCs including encouraging parents/carers to schedule follow-up visits with GP post-discharge, ensuring parents/carers are provided with standard asthma resource pack, offering referrals to asthma education sessions, sending a letter to the child's GP advising of the child's recent hospital presentation and coordinating asthma education webinar for GPs. In addition, in Phase II CCs sent text messages to parents/carers reminding them to follow-up with the child's GP. We compared the change in ED visits and hospital admissions at baseline (6 months pre-enrolment) and at 6-and 12-months post-enrolment in the program. Results: During December 2016-January 2021, 160 children (99 in Phase I and 61 in Phase II) were enrolled. Compared to baseline at 6- and 12-months post-enrolment, the proportion of children requiring ≥1 asthma ED presentations reduced by 43 and 61% in Phase I and 41 and 66% in Phase II. Similarly, the proportion of children requiring ≥1 asthma hospital admissions at 6- and 12-months post-enrolment reduced by 40 and 47% in Phase I and 62 and 69% in Phase II. Conclusion: Our results support that care coordinator led integrated model of asthma care which enables integration of acute and primary care services and provides families with asthma resources and education can reduce asthma hospital presentations in children.

'Advocacy groups are the connectors': Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics.

INTRODUCTION: Biomedical progress has facilitated breakthrough advanced neurotherapeutic interventions, whose potential to improve outcomes in rare neurological diseases has increased hope among people with lived experiences and their carers. Nevertheless, gene, somatic cell and other advanced neurotherapeutic interventions carry significant risks. Rare disease patient organizations (RDPOs) may enhance patient experiences, inform expectations and promote health literacy. However, their perspectives are understudied in paediatric neurology. If advanced neurotherapeutics is to optimize RDPO contributions, it demands further insights into their roles, interactions and support needs. METHODS: We used a mixed-methodology approach, interviewing 20 RDPO leaders representing paediatric rare neurological diseases and following them up with two online surveys featuring closed and open-ended questions on advanced neurotherapeutics (19/20) and negative mood states (17/20). Qualitative and quantitative data were analysed using thematic discourse analysis and basic descriptive statistics, respectively. RESULTS: Leaders perceived their roles to be targeted at educational provision (20/20), community preparation for advanced neurotherapeutic clinical trials (19/20), information simplification (19/20) and focused research pursuits (20/20). Although most leaders perceived the benefits of collaboration between stakeholders, some cited challenges around collaborative engagement under the following subthemes: conflicts of interest, competition and logistical difficulties. Regarding neurotherapeutics, RDPO leaders identified support needs centred on information provision, valuing access to clinician experts and highlighting a demand for co-developed, centralized, high-level and understandable, resources that may improve information exchange. Leaders perceived a need for psychosocial support within themselves and their communities, proposing that this would facilitate informed decision-making, reduce associated psychological vulnerabilities and maintain hope throughout neurotherapeutic development. CONCLUSION: This study provides insights into RDPO research activities, interactions and resource needs. It reveals a demand for collaboration guidelines, central information resources and psychosocial supports that may address unmet needs and assist RDPOs in their advocacy. PATIENT OR PUBLIC CONTRIBUTION: In this study, RDPO leaders were interviewed and surveyed to examine their perspectives and roles in advanced neurotherapeutic development. Some participants sent researchers postinterview clarification emails regarding their responses to questions.

Protocol for the implementation evaluation of an integrated paediatric and primary care model: Strengthening Care for Children (SC4C).

INTRODUCTION: Implementation evaluations provide insight into how interventions are delivered across varying contexts and why interventions work in some contexts and not in others. This manuscript outlines a detailed protocol of an implementation evaluation embedded in a stepped-wedge cluster randomised controlled trial of a model of care, Strengthening Care for Children (SC4C), that integrates paediatric care in general practice. The purpose of this manuscript is to describe the pragmatic methods that will be used to capture implementation evaluation process and outcome data within this trial. METHODS AND ANALYSIS: Our implementation evaluation will use a mixed methods design, with data collected in the intervention arm of the SC4C trial guided by a logic model developed using the Consolidated Framework for Implementation Research (CFIR) and Proctor and colleague's taxonomy of implementation outcomes. Data collection will be via questionnaires and semistructured interviews with general practitioners, paediatricians, general practice administrative staff and children and families. Each of the 21 general practices recruited into the study will be described in terms of staffing, patient throughput and location, in addition to the nuanced inner and outer contexts, use of the intervention and its acceptability. We will quantify implementation effectiveness in each general practice clinic using the CFIR validated scoring system. Importantly, we have embedded data collection post intervention to enable assessment of the sustainable adoption of the intervention. An inductive approach to the analysis of qualitative data will identify additional emerging themes that may not be covered by the formal frameworks underpinning our analysis. ETHICS AND DISSEMINATION: Ethical approval was granted by the Royal Children's Hospital Ethics Committee in August 2020 (HREC: 65955). Results will be submitted for publication in peer-reviewed journals and presented at relevant conferences. TRIAL REGISTRATION NUMBER: Australia New Zealand Clinical Trials Registry 12620001299998 on 1 December 2020.