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.
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.
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.
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