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.

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.

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.

Community-based child development service fetal alcohol spectrum disorder assessment: A retrospective clinic audit.

AIMS: The aims of the current study were to: (i) report on the diagnostic profile of a group of children assessed for fetal alcohol spectrum disorder (FASD) using the Australian Guide to the Diagnosis of FASD; and (ii) to provide information and recommendations for paediatricians and/or multidisciplinary teams conducting FASD assessments, including utilising the Australian Guide to the Diagnosis of FASD, and details of how to do FASD assessment. METHODS: A retrospective chart review was conducted using relevant demographic and diagnostic data from children assessed for FASD within a community child development service. RESULTS: Results showed the widespread impact of FASD on the brain, with all children showing some level of impairment in at least 5 out of 10 of the neurodevelopmental domains assessed for FASD. Majority of children were diagnosed with co-morbid attention deficit hyperactivity disorder, however, many additional co-morbid diagnoses were evident. CONCLUSIONS: The current study detailed the profile of children assessed for FASD and was the first to report the diagnostic profile of children assessed using the Australian Guide to the Diagnosis of FASD within a community child development service. Several recommendations are provided to assist paediatricians and multidisciplinary teams involved in child development assessments.

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.

A fetal alcohol spectrum disorder diagnostic service and beyond: Outcomes for families.

BACKGROUND: Fetal alcohol spectrum disorder (FASD) is of significant concern for Australians for many reasons, one being Australia's drinking culture which increases the potential for FASD to occur. AIMS: The current study aimed to explore the lived experiences of Australian caregivers who received a FASD diagnosis for a child in their care, usingthe Australian Guide to the Diagnosis of FASD. METHODS AND PROCEDURES: Semi-structured interviews were conducted with seven caregivers whose children were assessed for FASD by a multidisciplinary team. Interviews explored how families experienced the FASD diagnostic process, and sought insight into outcomes for families following diagnosis, particularly in relation to accessing supports and services. OUTCOMES AND RESULTS: Through thematic analysis, five overarching themes were identified: (1) receiving a FASD diagnosis had a positive impact; (2) caregivers' evaluation of assessment process; (3) positive support services relative to FASD; (4) ongoing difficulties regardless of diagnosis; and (5) need for societal knowledge of FASD. CONCLUSIONS AND IMPLICATIONS: Given the global need for standardised FASD diagnostic procedures and accurate reporting of prevalence rates, the current study provides a contribution to the emerging diagnostic FASD literature, and insight into families' experiences who have children diagnosed with FASD. WHAT THIS PAPER ADDS: This study provides additional information to the developing pool of literature attempting to create a typical profile of FASD. Most importantly, this paper highlights the implementation of the Australian Guide to the Diagnosis of FASD, and evaluates caregivers' experiences of their child's FASD assessment process, within a public FASD diagnostic service, using the revised guidelines.