P-HOC includes caregivers to individuals with FASD from around the world who are members of the Caregiver Club organized by Jeff Noble. Caregivers will complete surveys before (T1), after (T2), and 6 months (T3) following completion of the Towards Healthy Outcomes training modules created in collaboration with Jeff Noble using the Towards Healthy Outcomes (THO) format. Caregivers will be provided with a prototype of a planning resource based on the 12 THO domains that they will be able to use as they engage in goal setting with the individuals with FASD they support at various developmental stages in the lifespan. Focus groups will be conducted between T2 and T3 surveys for caregiver club members who are interested regarding their experiences with THO and the planning resource. 

Individuals with fetal alcohol spectrum disorder (FASD) experience a wide range of strengths and needs. The clinical diagnostic assessment process creates an opportunity to understand each client’s unique profile. Clinicians can identify and provide well-suited, targeted recommendations for interventions and other avenues for support. At times, diagnostic reports that follow the assessment for FASD include detailed clinical content and many complicated recommendations for individuals with FASD and their families to understand and follow through on. To enhance effective communication of these critical pieces of information, our research team has engaged four Canadian diagnostic clinics to explore ways clinical information and recommendations that support healthy outcomes link to current evidence from the intervention research literature. Adding to this, we considered how to present information using responsive and motivating language that reduces sigma and effectively translates in actionable ways to individuals with FASD, their families, and community members. 

Through close consultation and collaborative work with our Canadian FASD diagnostic clinic partners, our research team developed a pilot knowledge translation tool called The Client-Oriented Mapping for Point of Care Access to Supports and Services (COMPASS). The tool is intended to be an add-on resource that accompanies the diagnostic report. When developing COMPASS, we first completed a secondary data analysis using a large Canadian database of individuals with FASD across the lifespan. This step allowed us to identify neurodevelopmental trends, such as developmental considerations, and their relationship to recommendations and interventions. At the same time, we developed the COMPASS resource, based on the Towards Healthy Outcomes framework, informed by research evidence, and geared towards supporting consistent and strength-based intervention planning across the lifespan. We continue to work collaboratively with our Canadian diagnostic clinic partners to revise the tool and to ensure that COMPASS functions well as an adjunct evidence-informed resource for clients and families following an FASD diagnostic assessment. Our evaluation of COMPASS is ongoing, with the eventual goal of rolling COMPASS out in other Canadian diagnostic clinics. 

The COMPASS Project was made possible by Kids Brain Health Network. For more information please visit: https://kidsbrainhealth.ca/index.php/portfolio-items/mapping-fasd-supports-for-each-childs-life/?portfolioCats=1237