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

Around one quarter of the community in the principle town identify as First Nations. This town services surrounding communities where up to 94% identified as First Nations. The diversity of nation groups and the low socio-economic status within the region is likely due to the forced removal of people from their lands and the exploitive nature of colonisation on the community. The team recognises the power of colonised privilege and did not want to create another mechanism for subjugation [11]. We aimed to acknowledge the determinants of inequity, and to embed the project within the First Nation worldview and philosophy. To this end, First Nations co-leadership has been part of the project from its inception. As a First Nations rural general practitioner, one of the authors (MP) was instrumental in creating a culturally safe space for the research team to connect with local Elders. Using an ‘all teach, all learn approach [12], Elders travelled to the urban center to meet the research team, and the research team visited the remote community to learn more about First Nations’ worldview. Time was set aside to create space for two-way learning between First Nations and non-First Nations researchers [12]. For example, through yarning or story-telling, and cooking food ‘on country’, local community members and Elders provided cultural competence training to the research team. This included learning about the sacred nature of land and animals, which shaped the assessment process by incorporating local totems. Additionally, the research team recognised that trust, or feeling comfortable, was measured by the quality of relationships and the value of genuine connection, which comes from the heart. Strong ties emerged through weekly and sometimes daily phone conversations between Elders and key research personnel, solidifying the quality of the relationships, despite the distance. Furthermore, the importance of ensuring that First Nations health practitioners support First Nations children and families who participate in the assessment process was highlighted to the research team. Together it was decided the assessment process needed to be holistic, including attention to the physical, spiritual, cultural, emotional and social well-being of the community and fitting in with community capacity.

Specific local cultural protocols will continue to guide the project. This includes recognition of the multiple nation/language groups in the region; skinship and kinship rules relating to customs, processes, roles, and responsibilities of First Nations individuals; knowledge of the person(s) by whom one should be guided about local practices (e.g., community elders); seeking necessary permissions (e.g., permission to conduct the project from the Traditional Owners of the Land); and respecting First Nations lore (e.g., respect for traditional laws referring to common features of acceptable and unacceptable behaviour in First Nations Communities).

Broad cultural protocols outlining how to conduct research with First Nations communities [13‐16] have corroborated what has been learned from Elders and will support engagement and implementation. Themes from these protocols include respect for First Nation’s ways and knowledge, co-creating programs with the community, enabling a community governance, incorporating narrative practices (e.g., yarning), focusing on strength-based empowerment, implementing assessments cautiously, and investing time in relationships that demonstrate equality, integrity, respect, responsibility, reciprocity, and cultural continuity. Local and broad cultural protocols provide the overarching guide to ensure the project purposefully seeks and responsively includes First Nation’s knowledge, community characteristics / needs, with evidence-based practice and practical service delivery barriers. Notably, First Nations was the largest cultural group within the remote region; however, the project sought to identify and respect the needs of other local cultural groups including rural, farming and refugee cultures as well as respecting needs that are specific to societal challenges, such as low socio-economic status.

Implementation science is “the scientific study of methods to promote the systematic uptake of research findings and other evidence-based practices into routine practice, and hence, to improve the quality and effectiveness of health services and care”^p.1 [17]. Due to the recent proliferation of implementation science theories, Nilsen categorised these theories into three specific aims (a): describing the process of transforming research into practice (b); understanding factors that influence the outcomes of an implementation; and (c) evaluating the implementation [18]. The current project adopted Nilsen’s recommendations to identify an implementation theory that would assist with each aim at the outset of the project. The Yapatjarrathati Project adopted: (a) the Knowledge-to-Action (KTA) framework to highlight the process of translating research into practice; (b) Experience-based co-design to recognise the factors that influence the implementation; and (c) the RE-AIM framework to provide a mechanism for evaluating the implementation (See Fig. 1).

The Knowledge-to-Action (KTA) Framework outlines two distinct, but related processes for translating knowledge: (a) the knowledge creation phase; and (b) the action cycle [18, 19]. ‘Knowledge Creation’ involves the synthesis of evidence-based information and tools that represent this synthesis (e.g., educational modules, practice guidelines, or decision aids for practitioners). For example, as part of the knowledge creation phase, the project team systematically reviewed international strategies for assessing neurodevelopment broadly, and FASD in particular, to identify how the Australian FASD Guidelines can be flexibly adapted to the limitations inherent in remote communities (i.e., large numbers of children requiring assessment, not enough specialist multidisciplinary teams to provide assessments).

The ‘Action Cycle’ outlines the process of adapting knowledge to the local context and explicitly assessing barriers and facilitators to the use of this knowledge. For example, newly developed educational tools within the assessment process have been co-designed and guided by feedback from the local community. The process of obtaining this feedback has been iterative and non-linear, providing the necessary flexibility to adapt knowledge to the local context.

Experience-based co-design (EBCD) is an approach that emphasises collaboration between researchers, service-users, families and staff to improve health services. EBCD incorporates participatory action research, user-centred design, learning theory and narrative-based approaches to change [20]. EBCD follows a general process of: (a) gathering experiences from staff, service-users and family members; (b) identifying ‘touchpoints’ [i.e., crucial moments when a service user (or patient) comes into contact with a service environment (or organisation)]; (c) providing this information to the participants; (d) prioritising the touchpoints; (e) bringing everyone together for a co-design event; and (f) holding a celebration to review what has been achieved [20, 21]. This co-design process places the community’s values and needs at the very heart of the research outcomes. In the current project, one crucial touchpoint was seeking informed consent from caregivers to conduct the child’s assessment. A local, First Nations, rural general practitioner (author MP) developed a dreamtime story that incorporated the research teams’ evidence-based information about neurodevelopmental assessments with culturally appropriate story-telling. This explained the assessment process to families in a culturally appropriate way and is used to seek informed consent from caregivers before the assessment commences. Community members provided feedback on the story and commented that the story helped them better understand FASD as well as the assessment journey.

RE-AIM is a widely used framework for evaluating the implementation process [22]. The acronym stands for Reach, which provides details on the percentage of people from a given population who participate in a project and describes their characteristics; Effectiveness, the positive or negative outcomes of the project; Adoption, the percentage of possible organisations and staff that agree to participate in a project; Implementation, the process of turning strategies and plans into action, the cost-effectiveness and the fidelity of the project to the original design; and Maintenance, which captures the sustainability of the project at both an individual and organisational level [23, 24]. RE-AIM will be used to evaluate the service delivered to the community and the training provided to practitioners to upskill them in this new model of care.

Empowering remote locations to implement new assessment procedures involves mobilising knowledge that already exists within the community and supporting local practitioners in acquiring new knowledge. One of the most common forms of continuing education for health care workers is workshop attendance. While often cost-effective, attending workshops tends to be relatively unsuccessful at changing practices over the long term [25, 26]. Interactive dissemination strategies (e.g., observing, rehearsing and practicing skills, supervision and peer discussion) are required to create sustained change in usual care and result in better retention of information, practitioner satisfaction, self-efficacy, and use of the techniques learned [27‐29]. In the current project, experienced professionals from urban areas already delivering FASD services have offered workshops in the remote location and will deliver one-to-one or small group clinical supervision and mentoring to practitioners by videoconference. This offers the opportunity for staff to engage in reflective practice tailored to their knowledge and to rehearse new skills [30, 31]. When assessments commence, collaborative, inter-professional case-based learning will also be delivered by videoconference across agencies to provide the opportunity to learn from other practitioners across diverse disciplines, develop professional support networks and consolidate new skills. This offers a diverse range of interactive dissemination strategies to maximally support remote practitioners in accessing evidence-based information for complex cases from experts in the field.

Project procedures and materials will be discussed at regular intervals with a stakeholder group that has representation from local Elders, First Nations health practitioners, community agencies and practitioners and community members.

A convenience sample of primary, secondary, and end users will be interviewed across agencies to evaluate outcomes from the project [interviews will continue until data saturation has occurred (i.e., based on the amount of repetition in the data)]. Yarning will be used as a research method to gather qualitative information with individuals from the stakeholder group, community members, and primary, secondary, and end users. This process of telling stories to share knowledge is recognised as a culturally appropriate method to gather information [37]. Yarning helps facilitate in-depth discussions and provides a culturally safe space for participants to tell their stories. Importantly, through privileging First Nation people’s voices, yarning is a means of changing health outcomes for First Nations Australians [38, 39]. Depending on the stage of the project, qualitative interviews will be conducted to identify: (a) community strengths and needs, (b) current community understanding of FASD, (c) the value of the educational tools, (d) the accessibility of the assessment process (for primary, secondary and end users), and (e) satisfaction with the assessment process. The information yielded will assist with quality enhancements of the assessment process, educational tools, and training resources beyond the research study.

The assessment process has been co-created with the local stakeholder group and project team by combining information synthesised from the FASD literature and current practice guidelines (i.e., knowledge creation), with culturally appropriate materials and qualitative themes that emerged from yarning during the initial engagement phase of the study (i.e., action cycle). The assessment process consists of six tiers. Tier 1 is a culturally sensitive dreamtime story to explain the value of the assessment process to families and to seek informed consent. Tier 2 involves a culturally sensitive developmental interview, a specific measure of alcohol use during the pregnancy (the Alcohol Use Disorders Identification Test-Consumption) [40], and physical measurements [2]. Tier 3 involves the administration of the Rapid Neuro-Developmental Assessment (RNDA) [41], an abbreviated functional assessment that screens for vision and hearing problems and provides information about seven of the ten neurodevelopmental domains required to assess FASD (motor, speech, cognition, attention, hyperactivity and impulse control, adaptive behaviour and social skills, and seizures). Tier 4 involves collecting collateral information from a caregiver and teacher to obtain information about attention, executive functioning, affect regulation, and adaptive functioning. Typically, this involves a structured questionnaire such as the Behavior Assessment System for Children, third edition (BASC-3) [42]. Tier 5 collates information for an initial case formulation and commences the planning of evidence-based intervention strategies with the information already obtained, starting the child on a support trajectory regardless of diagnostic status. This includes a case conference between the family, practitioners, educators and others involved in the child’s care to plan the best support trajectory for the child. Where required, tier 6 ‘drills down’ to provide more in-depth assessment of any of the ten neurodevelopmental domains by specialists, as clinically indicated. This includes additional feedback to key stakeholders as required.

The tiered process provides a soft-entry into the health care system. Community-based professionals (e.g., First Nations health workers, early childhood educators, youth workers, child safety officers) can use Tiers 1–4 as a screener for neurodevelopmental impairment, collecting as much information as possible within the child’s daily environment. This provides the opportunity for health workers and educators to connect in culturally meaningful ways with families and to commence the assessment process inside family homes or schools, and outside of mainstream medical settings. Multiple disciplines contribute to the collation of information (as indicated in the Australian Guide to FASD diagnosis), and a qualified health professional in the primary care system (typically a general practitioner) becomes the central point of care to make a diagnostic decision where possible, or to refer for more comprehensive assessment, as indicated.

A tiered training process has been developed to match the assessment process. With the help of the local stakeholder group, initial broad training sessions were provided to practitioners in the community, providing information about the effects of prenatal alcohol exposure on brain development, the benefits of assessment and strategies for support. Service maps of the local area were developed, and community agencies were invited to attend. Training was video recorded and provided as webinars for practitioners who could not attend. Subsequently, detailed training for the tiered assessment process was provided to practitioners who identified at the initial training as interested in participating. Surveys of knowledge, sense of competence and current practices were administered pre and post training sessions and will be re-administered 6 months following training sessions with practitioners.

Community members and/or practitioners will refer children suspected of prenatal alcohol exposure, or children where there are concerns about neurodevelopmental delays, to partner agencies within the community. A local project coordinator will commence the tiered assessment process. This coordinator assists the local general practitioners, who act as the central point of care for collating information from community practitioners, coordinating case conferences, and future referrals to specialists. Any community practitioner who received training in the tiered, culturally sensitive, neurodevelopmental assessment process is eligible for support through a combination of individualised clinical supervision, as well as multidisciplinary tele-mentoring. This support assists primary users in clinical decision making related to neurodevelopmental assessments, and secondary users in understanding their role in the assessment process, the information that is within their scope of competence to collect, and how they can best assist the child, family and GP in providing coordinated local care.

Initially, experts from urban settings already providing FASD assessments will provide regular individualised, tele-mentoring to these local remote professionals. It is anticipated that a local practitioner network will emerge as an outcome of this project, sustainably leaving a competent, supportive network of professional relationships that have developed over the course of supervision and mentoring. This network can continue after the term of funding for the project is completed.

RE-AIM will guide the evaluation of the implementation trial. A detailed description of how each RE-AIM domain will be assessed is presented in Table 1.