Carer-reported sleep disturbance and carer- and teacher-rated executive functioning in children with prenatal alcohol exposure and Fetal Alcohol Spectrum Disorder.

Children with prenatal alcohol exposure (PAE) and Fetal Alcohol Spectrum Disorder (FASD) have high rates of sleep disturbance and marked difficulties with executive functioning (EF). Sleep disturbance has been associated with poorer EF across development in typically developing children. The contribution of insomnia symptoms and nightmares to EF difficulties in children with PAE and FASD is unclear. The current study examined whether caregiver-reported insomnia symptoms and nightmares predicted difficulties with EF in children with PAE who were assessed at FASD diagnostic clinics. Archival data on 116 children with PAE assessed at FASD diagnostic clinics were extracted from databases. Children were assigned to a preschool-age group (3.1 to 5.9 years, n = 40) and a school-age group (5.9 to 10.9 years, n = 76). Insomnia symptoms and nightmares were measured using items extracted from the Child Behavior Checklist (CBCL) while EF was measured using the caregiver and teacher Behavior Rating Inventory of Executive Function (BRIEF) rating forms. Bootstrapped regression models were used examine the effects of insomnia symptoms and nightmares on domains of EF in each group while adjusting for potential confounds. For preschool children, insomnia symptoms were associated with greater daytime tiredness while nightmares were associated with greater difficulties with Emergent Metacognition according to their teachers. For school-age children, insomnia symptoms predicted greater EF difficulties across most domains according to their caregivers but not teachers. Sleep disturbance may compound EF impairments in children with PAE and should be screened for as part of FASD diagnostic assessment.

Diagnostic Accuracy and economic value of a Tiered Assessment for Fetal Alcohol Spectrum Disorder (DATAforFASD): Protocol.

INTRODUCTION: Australian practices for diagnosing fetal alcohol spectrum disorder (FASD) are lengthy and require specialist expertise. Specialist teams are based in urban locations; they are expensive and have prolonged waitlists. Innovative, flexible solutions are needed to ensure First Nations children living in rural/remote communities have culturally appropriate and equitable access to timely diagnosis and support. This study compares the accuracy of rapid assessments (index tests) that can be administered by a range of primary healthcare practitioners to specialist standardised FASD assessments (reference tests). The cost-efficiency of index tests will be compared with reference tests. METHODS AND ANALYSIS: At least 200 children aged 6-16 years at-risk of FASD will be recruited across at least seven study sites. Following standards for reporting diagnostic accuracy study (STARD) guidelines, all children will complete index and reference tests. Diagnostic accuracy statistics (including receiver operating curves, sensitivity, specificity, positive and negative predictive values and likelihood ratios) will identify whether rapid assessments can accurately identify: (1) the presence of an FASD diagnosis and (2) impairment in each neurodevelopmental domain, compared to comprehensive assessments. Direct and indirect healthcare costs for index tests compared to reference tests will be collected in primary healthcare and specialist settings. ETHICS AND DISSEMINATION OF RESULTS: Children's Health Queensland Hospital and Health Service Human Research Ethics Committee (HREC/20/QCHQ/63173); Griffith University Human Research Ethics Committee (2020/743). Results will assist in validating the use of index tests as part of a tiered neurodevelopmental assessment process that was co-designed with First Nations community and primary healthcare practitioners. Outcomes will be summarised and provided to participating practitioners and sites, and disseminated to community health services and consumers. Findings will be presented at national and international conferences and published in peer-reviewed journals. TRIAL REGISTRATION NUMBER: ACTRN12622000498796.

Understanding the impacts of childhood adversity on sleep problems in children with fetal alcohol spectrum disorder: A comparison of cumulative and dimensional approaches.

BACKGROUND: The developmental impacts of prenatal alcohol exposure (PAE) and postnatal exposure to adversity are typically considered in isolation. However, both contribute independently to sleep problems. Children with fetal alcohol spectrum disorder (FASD) have PAE and significant sleep disturbances. What is not clear is the relative contribution to these disturbances of exposure to early life adversity. This study examined how exposure to such adversity impacts frequent insomnia symptoms and nightmares in children with FASD and "At Risk" designations. METHODS: We compared two approaches to modeling adversity in children who had undergone a diagnostic assessment for FASD: a cumulative risk approach that sums adversities to create a total score and an approach that treats exposure to threat and deprivation as independent dimensions. Data on caregiver-reported exposure to adversity and sleep problems for 63 children (aged 3 years 4 months to 7 years 8 months) were extracted from clinical archives. Cumulative risk, threat exposure, and deprivation exposure scores were computed and were tested as predictors of insomnia symptoms and nightmares. All analyses controlled for age and gender. RESULTS: There were high rates of caregiver-reported sleep problems with 60.3% (n = 38) of children having nightmares and 44.4% (n = 28) having a frequent insomnia symptom. The cumulative risk analysis showed that for every additional exposure to adversity, the odds of having a caregiver-reported insomnia symptom increased by 38%. The dimensional analysis showed no relationship between deprivation and sleep problems. However, every additional exposure to threat increased the odds of nightmares by 93%. CONCLUSIONS: Exposure to postnatal adversity contributes to sleep disturbances in children with FASD, with unique roles for cumulative risk and the threat dimension of adversity. The implications of these findings for the etiology and treatment of sleep disturbances in children with FASD are discussed.

Lived experiences of the diagnostic assessment process for fetal alcohol spectrum disorder: A systematic review of qualitative evidence.

Early assessment and diagnosis of FASD are crucial in providing therapeutic interventions that aim to enhance meaningful participation and quality of life for individuals and their families, while reducing psychosocial difficulties that may arise during adolescence and adulthood. Individuals with lived experience of FASD have expertise based on their own lives and family needs. Their insights into the assessment and diagnostic process are valuable for improving service delivery and informing the provision of meaningful, person- and family-centered care. To date, reviews have focused broadly on the experiences of living with FASD. The aim of this systematic review is to synthesize qualitative evidence on the lived experiences of the diagnostic assessment process for FASD. Six electronic databases, including PubMed, the Cochrane Library, CINAH, EMBASE, PsycINFO, and Web of Science Core Collection were searched from inception until February 2021, and updated in December 2022. A manual search of reference lists of included studies identified additional studies for inclusion. The quality of included studies was assessed using the Critical Appraisal Skills Program Checklist for Qualitative Studies. Data from included studies were synthesized using a thematic analysis approach. GRADE-CERQual was used to assess confidence in the review findings. Ten studies met the selection criteria for inclusion in the review. Thematic analysis identified 10 first-level themes relating to four over-arching topics: (1) pre-assessment concerns and challenges, (2) the diagnostic assessment process, (3) receipt of the diagnosis, and (4) post-assessment adaptations and needs. GRADE-CERQual confidence ratings for each of the review themes were moderate to high. The findings from this review have implications for referral pathways, client-centered assessment processes, and post-diagnostic recommendations and support.

An investigation of the utility of the Australian Guide to the Diagnosis of Fetal Alcohol Spectrum Disorder in young children.

BACKGROUND: Early diagnosis of children with fetal alcohol spectrum disorder (FASD) assists in implementing critical early support. The challenge lies in having a diagnostic process that enables valid and reliable assessment of domains of functioning in young children, with the added complexity that many children will also have co-occurring exposure to childhood adversity that is likely to impact these domains. METHODS: The aim of this study was to test a diagnostic assessment of FASD in young children using the Australian Guide to the Diagnosis of FASD. Ninety-four children (aged 3 to 7 years) with confirmed or suspected prenatal alcohol exposure were referred to two specialist FASD clinics for assessment in Queensland, Australia. RESULTS: There was a significant risk profile with 68.1% (n = 64) children having had contact with child protection services, and most children living in kinship (n = 22, 27.7%) or foster (n = 36, 40.4%) care. Forty-one percent of the children were Indigenous Australians. The majority (64.9%, n = 61) of children met criteria for FASD, 30.9% were classified as "At Risk" for FASD (n = 29), and 4.3% received no FASD diagnosis (n = 4). Only 4 (4%) children were rated as severe for the brain domain. Over 60% of children (n = 58) had two or more comorbid diagnoses. Sensitivity analyses indicated that the removal of comorbid diagnoses in the Attention, Affect Regulation, or Adaptive Functioning domains resulted in a change in 7 of 47 cases (15%) to an "At Risk" designation. CONCLUSIONS: These results highlight the complexity of presentation and the extent of impairment in the sample. The use of comorbid diagnoses to substantiate a "severe" designation in specific neurodevelopmental domains raises the question of whether there were false-positive diagnoses. The complexity of determining causal relationships between exposure to PAE and early life adversity on developmental outcomes continues to be a challenge in this young population.

Enhancing interprofessional practice through the co-design of a holistic culturally and developmentally informed First Nations child health assessment.

BACKGROUND: This qualitative study explored staff experiences of co-designing and implementing a novel interprofessional (IP) First Nations child health assessment (the helpful check), developed in partnership with a remote North-Queensland Aboriginal CommunityControlled Health Organisation. METHOD: Eleven staff across two teams (family health and allied health) were involved in co-designing and implementing the child health assessment and associated IP practices. Interviews were undertaken using a semi-structured interview template and were audio recorded and transcribed verbatim. Data were analysed using thematic analysis. RESULTS: Three overarching themes were developed: (1) connect teams by building strong relationships; (2) leave space for helpful check processes to evolve; and (3) integrate helpful check processes into routine practice to sustain change. CONCLUSIONS: Results demonstrate how the incorporation of IP practices into a remote primary healthcare setting led to perceived benefits for both the health service staff and clients.

Preventing Drift through Continued Co-Design with a First Nations Community: Refining the Prototype of a Tiered FASD Assessment.

As part of the broader Yapatjarrathati project, 47 remote health providers and community members attended a two-day workshop presenting a prototype of a culturally-safe, tiered neurodevelopmental assessment that can identify fetal alcohol spectrum disorder (FASD) in primary healthcare. The workshop provided a forum for broad community feedback on the tiered assessment process, which was initially co-designed with a smaller number of key First Nations community stakeholders. Improvement in self-reported attendee knowledge, confidence, and perceived competence in the neurodevelopmental assessment process was found post-workshop, assessed through self-report questionnaires. Narrative analysis described attendee experiences and learnings (extracted from the workshop transcript), and workshop facilitator experiences and learnings (extracted from self-reflections). Narrative analysis of the workshop transcript highlighted a collective sense of compassion for those who use alcohol to cope with intergenerational trauma, but exhaustion at the cyclical nature of FASD. There was a strong desire for a shared responsibility for First Nations children and families and a more prominent role for Aboriginal Health Workers in the assessment process. Narrative analysis from workshop facilitator reflections highlighted learnings about community expertise, the inadvertent application of dominant cultural approaches throughout facilitation, and that greater emphasis on the First Nation's worldview and connection to the community was important for the assessment process to be maintained long-term. This study emphasised the benefit of continued co-design to ensure health implementation strategies match the needs of the community.

Cost-Effectiveness of Care Coordination for Children With Chronic Noncomplex Medical Conditions: Results From a Multicenter Randomized Clinical Trial.

OBJECTIVES: To assess the cost-effectiveness of care coordination, compared with standard care, for children with chronic noncomplex medical conditions. METHODS: A total of 81 children aged between 2 and 15 years newly diagnosed with a noncomplex chronic condition were randomized to either care coordination or standard care as part of a multicenter randomized controlled trial. Families receiving care coordination were provided access to an Allied Health Liaison Officer, who facilitated family-centered healthcare access across hospital, education, primary care, and community sectors. Costs were estimated over a 12-month period from the perspective of the Australian health system. Health outcomes were valued as quality-adjusted life-years (QALYs). Caregiver productivity costs were included in an alternative base-case analysis, and key assumptions were tested in a series of one-way sensitivity analyses. A probabilistic sensitivity analysis was conducted to investigate the overall impact of uncertainty in the data. RESULTS: Children in the intervention arm incurred an average of $17 in additional health system costs (95% confidence interval -3861 to 1558) and gained an additional 0.031 QALYs (95% confidence interval -0.29 to 0.092) over 12 months, producing an incremental cost-effectiveness ratio of $548 per QALY. When uncertainty was considered, there was a 73% likelihood that care coordination was cost-effective from a health system perspective, assuming a willingness to pay of $50 000 per QALY. This increased to 78% when caregiver productivity costs were included. CONCLUSIONS: Care coordination is likely to be a cost-effective intervention for children with chronic noncomplex medical conditions in the Australian healthcare setting.

Integrating cultural considerations and developmental screening into an Australian First Nations child health check.

The aim of the present study was to integrate cultural considerations and developmental screening into a First Nations child health check. The 'Share and Care Check,' an optimised child health check, was co-designed with a remote Aboriginal Community Controlled Health Organisation and led by Aboriginal Health Practitioners/Workers. Of 55 families who completed the Share and Care Check, the majority of participants indicated that their family/child was connected with their tribe and country. However, half of the caregivers reported that they or their child would like to know more about their tribe. The most common developmental screening outcome was no functional concerns (32.7%), followed by having one area identified as a functional concern (24.5%) and two functional concerns (16.3%). All caregivers reported that the Share and Care Check was culturally appropriate, and the majority also reported that it was helpful. Data obtained from questions regarding cultural and developmental aspects of health can assist health providers regarding the best pathway of support for a child and their family. This could ultimately contribute to closing the gap through the provision of holistic culturally appropriate services.

Effect of Care Coordination Using an Allied Health Liaison Officer for Chronic Noncomplex Medical Conditions in Children: A Multicenter Randomized Clinical Trial.

IMPORTANCE: There is a paucity of high-quality evidence on the effect of care coordination on health-related quality of life among children with chronic noncomplex medical conditions (non-CMCs). OBJECTIVE: To examine whether care coordination delivered by an Allied Health Liaison Officer results in improved quality-of-life (QOL) outcomes for children with chronic non-CMCs and their families. DESIGN, SETTING AND PARTICIPANTS: This multicenter, open label, randomized clinical trial was conducted in pediatric outpatient clinics at 3 Australian hospitals with tertiary- and secondary-level pediatric care facilities. A total of 81 children with chronic non-CMCs and their families participated in the trial for a period of up to 12 months between October 2017 to October 2020. Primary care reviews were offered at 1 week, 3 months, and 6 months after diagnosis. INTERVENTIONS: Eligible children were randomized 1:1 to receive care coordination or standard care. Families of children receiving care coordination were provided access to an Allied Health Liaison Officer, who was responsible for facilitation of health care access across hospital, education, primary care, and community sectors. MAIN OUTCOMES AND MEASURES: The primary outcomes were scores on the Pediatric Quality of Life Inventory (PedsQL), version 4.0, and the PedsQL Family Impact Module, version 2.0, measured at 6 and 12 months. An intent-to-treat approach was used to analyze the data. RESULTS: Of 81 children (mean [SD] age, 8.2 [3.5] years; 55 [67.9%] male), 42 (51.9%) were randomized to care coordination and 39 (48.1%) to standard care. Compared with standard care, care coordination resulted in greater improvements in overall PedsQL scores (difference in score changes between groups, 7.10; 95% CI, 0.44-13.76; P = .04), overall PedsQL Family Impact Module scores (difference in score changes between groups, 8.62; 95% CI, 1.07-16.16; P = .03), and family functioning QOL (difference in score changes between groups, 15.83; 95% CI, 5.05-26.62; P = .004) at 12 months after diagnosis. CONCLUSIONS AND RELEVANCE: In this randomized clinical trial, care coordination improved the quality of life of children with chronic non-CMCs and their families. Further studies should explore specific non-CMCs that may benefit most from care coordination and whether an orientation among health services to provide such a coordination model could lead to longer-term improved clinical outcomes. TRIAL REGISTRATION: http://anzctr.org.au Identifier: ACTRN12617001188325.

Interventions for improving executive functions in children with foetal alcohol spectrum disorder (FASD): A systematic review.

Background: The consequences for children born with birth defects and developmental disabilities encompassed by foetal alcohol spectrum disorder (FASD) are profound, affecting all areas of social, behavioural and cognitive functioning. Given the strong evidence for a core deficit in executive functioning, underpinned by impaired self-regulation skills, there has been a growing focus on the development of interventions that enhance or support the development of executive functions (EFs). Objectives: The primary objective of this review is to synthesise the evidence for structured psychological interventions that explicitly aim to improve EF in children. The review also sought to ascertain if the effectiveness of interventions were influenced by characteristics of the intervention, participants or type of EF targeted by the intervention. Search Methods: Sixteen databases, 18 grey literature search locations and 9 trial registries were systematically searched to locate eligible studies (up to December 2020). These searches were supplemented with reference harvesting, forward citation searching, hand searches of topic-relevant journals and contact with experts. Selection Criteria: Studies were included in the review if they reported on an impact evaluation of a psychological intervention aiming to improve EF in children 3-16 years who either had confirmed prenatal alcohol exposure or a formal diagnosis falling under the umbrella term of FASDs. Eligible study designs included randomised controlled trials (RCTs) and quasi-experimental designs with either no treatment, wait list control or an alternative treatment as a comparison condition. Single-group pre-post designs were also included. Data Collection and Analysis: Standard methodological procedures expected by the Campbell Collaboration were used at all stages of this review. Standardised mean differences (SMDs) were used to estimate intervention effects, which were combined with random effects meta-analysis (data permitting). Risk of bias was assessed using the Cochrane Risk of Bias Tool (RoB2) and Cochrane Risk of Bias in Non-Randomised Studies-Interventions tool (ROBINS-I). Main Results: The systematic search identified 3820 unique records. After title/abstract and full-text screening, 11 eligible studies (reported in 21 eligible documents) were deemed eligible, with a combined 253 participants. Of the 11 studies, 6 were RCTs, 1 was a quasi-experiment and 4 were single-group pre-post intervention designs. All studies were rated as having an overall high or serious risk of bias, with some variation across domains for RCTs. For RCT and quasi-experimental studies, the overall effect of EF interventions on direct and indirect measures of EF generally favoured the experimental condition, but was not statistically significant. There was no difference between intervention and comparison groups on direct measures of auditory attention (k = 3; SMD = 0.06, 95% confidence interval [CI] = -1.06, 1.18), visual attention (k = 2; SMD = 0.90, 95% CI = -1.41, 3.21), cognitive flexibility (k = 2; SMD = 0.23, 95% CI = -0.40, 0.86), attentional inhibition (k = 2; SMD = 0.04, 95% CI = -0.58, 0.65), response inhibition (k = 3; SMD = 0.47, 95% CI = -0.04, 0.99), or verbal working memory (k = 1; d = 0.6827; 95% CI = -0.0196, 1.385). Significant heterogeneity was found across studies on measures of auditory attention and visual attention, but not for measures of cognitive flexibility, attentional inhibition or response inhibition. Available data prohibited further exploration of heterogeneity. There was no statistical difference between intervention and comparison groups on indirect measures of global executive functioning (k = 2; SMD = 0.21, 95% CI = -0.40, 0.82), behavioural regulation (k = 2; SMD = 0.18, 95% CI = -0.43, 0.79), or emotional control (k = 3; SMD = 0.01, 95% CI = -0.33, 0.36). Effect sizes were positive and not significant for meta-cognition (k = 1; SMD = 0.23, 95% CI = -0.72, 1.19), shifting (k = 2; SMD = 0.04, 95% CI = -0.35, 0.43), initiation (k = 1; SMD = 0.04, 95% CI = -0.40, 0.49), monitoring (k = 1; SMD = 0.25, 95% CI = -0.20, 0.70) and organisation of materials (k = 1; SMD = 0.25, 95% CI = -0.19, 0.70). Effect sizes were negative and not statistically different for effortful control (k = 1; SMD = -0.53, 95% CI = -1.50, 0.45), inhibition (k = 2; SMD = -0.08, 95% CI = -0.47, 0.31), working memory (k = 1; SMD = 0.00, 95% CI = -0.45, 0.44), and planning and organisation (k = 1; SMD = -0.10, 95% CI = -0.55, 0.34). No statistically significant heterogeneity was found for any of the syntheses of indirect measures of EF. Based on pre-post single-group designs, there was evidence for small to medium sized improvements in EF based on direct measures (cognitive flexibility, verbal working memory and visual working memory) and indirect measures (behavioural regulation, shifting, inhibition and meta-cognition). However, these results must be interpreted with caution due to high risk of bias. Authors' Conclusions: This review found limited and uncertain evidence for the effectiveness of interventions for improving executive functioning in children with FASD across 8 direct and 13 indirect measures of EF. The findings are limited by the small number of high-quality studies that could be synthesised by meta-analysis and the very small sample sizes for the included studies.

An investigation of the link between prenatal alcohol exposure and sleep problems across childhood.

OBJECTIVE: To investigate the association between dose and frequency of prenatal alcohol exposure (PAE) and sleep problems in children, after controlling for established risk factors for sleep problems. METHODS: Data from the birth cohort of the Longitudinal Study of Australian Children (LSAC) was used. Mothers of 3447 children provided information on alcohol consumption during pregnancy, children's sleep problems from 2- to 9-years, and potential confounders associated with sleep problems. Children were classified into PAE groups based on distinct patterns of maternal drinking during pregnancy: abstinent, occasional, low, moderate, and heavy. The effect of PAE on the number and persistence of sleep problems across childhood (2-9 years) was examined. RESULTS: After controlling for multiple covariates that impact sleep, children with heavy PAE had 1.13 more sleep problems across childhood (2-9 years) relative to children whose mothers were abstainers, in particular 0.37 more at 2- to 3-years (0.504, 95 % CI 0.053, 0.956), and 0.34 more at 6- to 7-years (0.847, 95 % CI 0.299, 1.396). Compared to children of abstainers, heavy PAE increases the probability of having persistent sleep problems from 2- to 9-years by 22.57 %. No negative associations between moderate or low PAE and sleep were observed. Parenting, family, economic, and child health factors also significantly affected child sleep. CONCLUSION: Heavy PAE was associated with significantly more sleep problems across childhood and a higher probability of reporting persistent sleep problems, relative to children with no PAE. Implications for the understanding and management of sleep in young children with PAE and FASD are discussed.

Yarning about fetal alcohol spectrum disorder: Outcomes of a community-based workshop.

INTRODUCTION: There is a lack of neurodevelopmental assessment services in rural and remote locations in Australia that consider fetal alcohol spectrum disorder as a possible outcome. METHODS: Eighty-seven participants attended a workshop to support community-based professional development and co-design of a novel assessment approach. Qualitative data collection included video recording of the workshop, and small group discussions, for which a narrative analysis was utilised. Quantitative data collection included self-report questionnaires to understand current community practices and three key constructs: practitioner knowledge, attitudes, and intentions for future practice. RESULTS: The narrative analysis highlighted the ongoing impacts of colonisation, in terms of intergenerational trauma and alcohol use, experienced in the community today, and the potential high rates of fetal alcohol spectrum disorder. To address these issues, multiple strategies were discussed, including the recognition of First Nations knowledge and expertise and a focus on the next generation and community organisations working collaboratively. The pre-and post-questionnaires demonstrated that practitioners' knowledge and attitudes were enhanced after attending the workshop, however practitioner intentions were not. The lack of significance for the intentions variable may have been due to the small number of available responses for that variable, in comparison to the other two constructs. DISCUSSION: The current study identified key learnings from workshop facilitators and participants. The findings call attention to the importance of a co-design approach, where collaboration is vital to support the appropriate adaption of evidence-based practice to suit the local context.

Protocol for the Yapatjarrathati project: a mixed-method implementation trial of a tiered assessment process for identifying fetal alcohol spectrum disorders in a remote Australian community.

BACKGROUND: Fetal alcohol spectrum disorder (FASD) is a highly prevalent neurodevelopmental disorder associated with prenatal alcohol exposure. Early identification can improve functioning for individuals and reduce costs to society. Gold standard methods of diagnosing FASD rely on specialists to deliver intensive, multidisciplinary assessments. While comprehensive, prevalence rates highlight that this assessment model cannot meet demand, nor is it feasible in remote areas where specialist services are lacking. This project aims to expand the capabilities of remote practitioners in north Queensland, Australia, where 23-94% of the community identify as First Nations people. Integrating cultural protocols with the implementation science theories of Knowledge-To-Action, Experience-Based Co-Design, and RE-AIM, remote practitioners with varying levels of experience will be trained in a co-designed, culturally appropriate, tiered neurodevelopmental assessment process that considers FASD as a potential outcome. This innovative assessment process can be shared between primary and tertiary health care settings, improving access to services for children and families. This project aims to demonstrate that neurodevelopmental assessments can be integrated seamlessly with established community practices and sustained through evidence-based workforce development strategies. METHODS: The Yapatjarrathati project (named by the local First Nations community and meaning 'to get well') is a mixed-method implementation trial of a tiered assessment process for identifying FASD within a remote Australian community. In collaboration with the community, we co-designed: (a) a culturally sensitive, tiered, neurodevelopmental assessment process for identifying FASD, and (b) training materials that up-skill remote practitioners with varying levels of expertise. Qualitative interviews for primary, secondary and end users will be undertaken to evaluate the implementation strategies. RE-AIM will be used to evaluate the reach, effectiveness, adoption, implementation and maintenance of the assessment and training process. DISCUSSION: Co-designed with the local community, integrated with cultural protocols, and based on implementation science theories, the assessment and training process from this project will have the potential to be scaled-up across other remote locations and trialed in urban settings. The Yapatjarrathati project is an important step towards increasing the availability of neurodevelopmental services across Australia and empowering remote practitioners to contribute to the FASD assessment process.

Physiological self-regulation and mindfulness in children with a diagnosis of fetal alcohol spectrum disorder.

OBJECTIVE: To explore the differences in baseline respiratory sinus arrhythmia (RSA) between children with fetal alcohol spectrum disorder (FASD) and typically developing children (TDC) and to investigate whether children with FASD have the capacity to engage in a brief mindfulness exercise. METHODS: Participants were 14 children with FASD and 20 TDC. RSA was measured at baseline, during, and following a mindfulness exercise. A mindfulness compliance checklist was completed to ascertain if children could follow the task instructions. RESULTS: Both groups obtained high scores on the mindfulness compliance checklist. There was a trend for children with FASD to have lower baseline RSA compared to TDC. Children in both groups demonstrated an increase in RSA during the mindfulness task. CONCLUSIONS: Children with FASD could engage in a mindfulness task, and both groups showed an increase in RSA. Further research is needed to establish whether prolonged mindfulness practice could be beneficial.

Responding to fetal alcohol spectrum disorder in Australia.

Fetal alcohol spectrum disorder (FASD) is a significant public health issue in Australia that is poorly diagnosed, chronic and costly. FASD is a diffuse acquired brain injury secondary to prenatal alcohol exposure. The prevalence rate of FASD among the general population in Australia is currently unknown; however, an Australian study in a selected high-risk population reported some of the highest rates of FASD in the world. A common misconception among clinicians is that a child must have 'the face' of FASD to have the disorder. This is incorrect. The three sentinel facial features only occur in the minority of individuals with FASD. FASD should be considered as a 'whole body' disorder as increased susceptibility to chronic health problems suggests suboptimal in utero environments places the individual at risk of later disease. Clinicians are reluctant to consider FASD as a possible diagnosis because of the concern of inducing stigma; however, this concern is neither supported by the evidence nor patient stories. The Australian Guide to the Diagnosis of FASD is now available to assist health professionals in providing timely and accurate diagnoses, which can lead to improved outcomes via evidence-based intervention and is an important first step in future prevention.

Integrated children's clinic care (ICCC) versus a self-directed care pathway for children with a chronic health condition: a multi-centre randomised controlled trial study protocol.

BACKGROUND: Children with chronic health conditions have better health-related outcomes when their care is managed in a personalised and coordinated way. However, increased demand on Australian ambulatory care hospital services has led to longer waitlist times to access specialists and appropriate intervention services; placing vulnerable children at increased risk of poorer short-term (e.g. social difficulties) and long-term (e.g. convictions) health and social outcomes. Traditional approaches to increasing frequency and service of delivery are expensive and can have minimal impact on caregiver burden. A community based service-integration approach, rather than self-directed care is proposed as increased service linkages are more likely to occur and improve the health outcomes of children with a chronic health condition. METHODS: An open, unblinded, multi-centre randomised controlled trial in two Australian public hospitals. 112 children (0-16 years) fulfilling the inclusion criteria will be randomised to one of two clinical pathways for management of their chronic health condition: (1) integrated children's care clinic (ICCC) or (2) self-directed care pathway. All children and caregivers will be interviewed at 1 week, and 3, 6 and 12 month time intervals. Primary outcome measures include the Pediatric Quality of Life (PedQOL) questionnaire, Subjective Units of Distress Scale, Child Behaviour Checklist (CBCL) and Rotter's Locus of Control Scale. Secondary outcome measures include the total number of medical appointments, school days missed and quantity of services accessed. Our main objectives are to determine if the ICCC results in better health and economics outcomes compared to the self-directed care pathway. DISCUSSION: The success of a health systems approach needs to be balanced against clinical, mortality and cost-effectiveness data for long-term sustainability within a publicly funded health system. A clinical pathway that is sustainable, cost-effective, provides efficient evidence-based care and improves the quality of life outcomes for children with chronic health conditions has the potential to reduce waitlist times, improve access to health services, increase consumer satisfaction; and prevent costs associated with poorly managed chronic health conditions into adulthood. This study will be the first to provide clinical and health economics data on an integrated care pathway for the management of chronic health conditions in children. On a broader scale, results from this study will help guide care coordination frameworks for children with chronic health conditions; particularly with the introduction and implementation of a National Disability Insurance Scheme (NDIS) across Australia. TRIAL REGISTRATION: Australia and New Zealand Clinical Trials Register (ANZCTR) ACTRN12617001188325 . Registered: 14th August, 2017.

Feasibility study of a family-focused intervention to improve outcomes for children with FASD.

BACKGROUND: Growing evidence shows that children with fetal alcohol spectrum disorder (FASD) can benefit from interventions, and specifically interventions focused on improving self-regulation. However, novel ways of improving outcomes for children with FASD need further investigation so that programs target not only the individual child but also the family context, which includes the parent-child relationship. AIMS: The current study aimed to evaluate the feasibility of an adapted version of the Parents under Pressure (PuP) program that addresses self-regulatory processes, through improving the parent-child relationship and the use of mindfulness-based strategies for both children and parents. METHODS: This was a mixed methods study. Feasibility was examined by evaluating recruitment, data collection/outcome measures, and intervention procedures. The study used a phenomenological approach to obtain qualitative information from caregivers and a single-case experimental design to evaluate the preliminary participant responses to the intervention. RESULTS: Two out of three families completed treatment. The recruitment and intervention procedures were found to be suitable for and acceptable to the families involved. Some concerns were identified regarding the outcome measures that would need to be addressed in future research. Quantitative and qualitative outcomes were positive. CONCLUSIONS AND IMPLICATIONS: The results provide preliminary support for the feasibility of an adapted version of the PuP program. Thus, offering a potential multi-component option, that aims to improve self-regulatory skills for children with FASD, through focusing on improving the parent-child relationship and incorporating mindfulness-based techniques for both parents and children.