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

Abstract

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.

Evaluating the Implementation of a Mental Health Referral Service “Connect to Wellbeing”: A Quality Improvement Approach

“…These findings are consistent with the literature where a general lack of appropriate and compelling data for outcome evaluations is typical. While we identified some implementation science studies ( 30 ) and evaluations of stepped care in the areas of treating smoking dependence, maternal mental health and anxiety disorders, we were unable to locate outcomes evaluations for mental health services referral hubs similar to CTW in the literature. This highlights the need for evaluations, such as this one which seek to identify how the type of data needed for outcomes evaluations can be collected in the course of routine service provision, and the benefits of a QI approach for the process of implementing a new service.…”

Early detection of Australian Aboriginal and Torres Strait Islander infants at high risk of adverse neurodevelopmental outcomes at 12 months corrected age: LEAP-CP prospective cohort study protocol

“… 79 The screening tool is intended for use by lay health workers and has been successfully integrated into Aboriginal Health clinics at Gidgee Healing in Mt Isa, Queensland. 114 115 The instrument assesses the functional status of children aged 0–9 years to determine the presence and severity of NDIs across multiple domains. 79 116 117 Infants aged 1–24 months CA are assessed across eight domains: gross motor, fine motor, vision, hearing, speech, cognition, behaviour and seizures.…”

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

“…The second phase involved the qualitative collection of facilitator data post-workshop. Qualitative and quantitative components of the analysis were weighted equally in keeping with an ‘all teach-all learn’ approach [ 22 , 29 ]. Data were first analysed separately and integrated in the interpretation to allow for greater understanding of the results and application of the workshops.…”

“…The Yapatjarrathati project aimed to address some of these health inequities by utilising co-design to collaboratively redesign a more culturally-safe tiered neurodevelopmental assessment process that can identify FASD [ 22 ]. The process began by acknowledging that three-quarters of the research team and clinical specialists were not First Nations, were not from the local community, and therefore brought with them a Western cultural and medical bias.…”

“…A Dreamtime Story is a cultural practice used for teaching and remembering culturally important information [ 23 ]. The tiered approach follows the Australian guide to the diagnosis of FASD [ 24 ], but divides the assessment process into six manageable parts that can be completed in primary healthcare settings by different combinations of health providers depending on clinical need and availability [ 15 , 22 ]. The Dreamtime story is introduced in Tier 1 to explain the assessment journey and obtain informed consent.…”