Audrey McFarlane’s research while affiliated with University of Alberta and other places

Background: We address the question: If you wanted to start a fetal alcohol spectrum disorder (FASD) diagnostic clinic, what would you need to do, think about, and plan for, from a policy perspective? Our aims were to understand how clinics are developed and established and the key factors that facilitate their success. Method: Within a pragmatist epistemology, we conducted a basic qualitative study using semistructured interviews. Interviews were conducted with 12 key informants from 10 diagnostic clinics. Data were analysed using iterative thematic analysis. Results: We derived five themes pertaining to our objectives: (i) listening and responding to your community; (ii) community buy-in and practical steps; (iii) multidisciplinary team trust, respect, and collaboration; (iv) the clinic coordinator; and (v) promoting uniqueness and learning from each other. Conclusions: Our findings demonstrated the importance of local, community-based planning, team cohesion, and opportunities for mentorship in the development of new FASD clinical services.

Fetal alcohol spectrum disorder (FASD) is a complex neurodevelopmental disability characterized by a range of brain- and body-based difficulties which, when left unsupported, can lead to experiences of significant adversity across the lifespan. Caregivers of individuals with FASD play a critical role in advocating and supporting healthy outcomes for individuals with FASD, and most caregiver research to date has been focused on stressors and challenges. Very few studies have been conducted to systematically capture the full experience of caring for someone with FASD across the lifespan, including perspectives, concerns, as well as strengths and successes of caregivers and their families. Collaborative research with individuals with living experience is essential for understanding needs and supporting healthy outcomes for individuals with FASD and their families, and caregivers are in a unique and important position to provide perspectives and share living expertise. Therefore, the current study was developed collaboratively with caregivers and researchers to capture the many aspects of caregivers’ contexts, concerns, needs, and successes in raising individuals with FASD. In this study protocol paper, we describe the rationale, development, design, and anticipated impacts of this research. The goal of this paper is to share information about why and how this study is being done, and potentially guide other teams in developing similar projects to better understand caregivers’ experiences, needs, and successes. Documenting and giving voice to the breadth and depth of caregiver experiences will help us to tailor services and supports, develop resources, stimulate knowledge translation based in resilience and protective factors, guide future studies, and inform evidence-based policy initiatives.

Based on the most current research, the estimated prevalence of fetal alcohol spectrum disorder (FASD) in the general North American population is at least 8%. However, rates of FASD are believed to be higher in certain groups. Examining the varying rates of FASD across different groups is critical to understand the demographic, social, geographical, and cultural factors that underlie alcohol consumption during pregnancy, and which groups may benefit from additional or tailored support to promote healthy outcomes. The purpose of this issue paper is to take a closer look at the research on special groups thought to experience higher rates of FASD, including children in care, individuals involved in the criminal legal system, and Indigenous communities.

Since fetal alcohol syndrome was first defined in North America in the 1970s, researchers have been working to determine prevalence rates of the disability. Now referred to in Canada as fetal alcohol spectrum disorder (FASD), the social, health, and economic impacts of FASD for families and communities are profound, thus understanding its scope is critical. Over the years, researchers have used various methodologies in a range of geographical regions and populations around the world in their efforts to establish prevalence rates. Because of these differing approaches, FASD prevalence findings have not always been consistent. The purpose of this issue paper is to share the most up-to-date findings of FASD prevalence research and provide clarity around the question "How many people have FASD?".

This study investigated the diagnostic capacity for Fetal Alcohol Spectrum Disorder (FASD) in multidisciplinary clinics across several provincial and one territorial jurisdictions of Canada: Alberta, British Columbia, Manitoba, Ontario and Northwest Territories. The data were collected directly from clinics capable of providing diagnoses of FASD and examined annual capacity for the assessment and diagnosis of FASD per year from 2015 to 2019. In total, 58 FASD diagnostic clinics were identified and 33 clinics participated in this survey. The study identified inadequate FASD diagnostic capacity in all participating jurisdictions. Based on the findings and the current population sizes, it is estimated that 98% of individuals with FASD are undiagnosed or misdiagnosed in Canada. Wait times for FASD diagnosis ranged from 1 month to 4.5 years across participating jurisdictions. The annual FASD diagnostic capacity in the select provinces and territories require at least a 67-fold increase per year.

Background: The Canadian fetal alcohol spectrum disorder (FASD) diagnostic guideline provides clinicians with the process and procedure to reach an accurate diagnosis. However, organisational structure, culture, and resource utilisation vary. The objectives of this study were to identify the key challenges and strengths of successful FASD diagnostic clinics. Method: Qualitative interviews were conducted with 12 key informants from 10 clinics representing different regions, populations served, and clinic structures. Data analysis was performed using iterative thematic inquiry. Results: Three themes related to challenges and four themes related to strengths were identified. Human resources were identified as both a challenge and strength. Additional challenges were diagnostic capacity and system level support. Additional strengths were clinic adaptability, relational connections, and culturally responsive approaches. Conclusions: FASD clinics are more alike than not in their approach to assessment and diagnosis. Some clinics are facing similar challenges that others have overcome, supporting the need for mentorship and consistent operating standards.

This field report summarizes and advances key learnings for leveraging community–university partnerships addressing housing service gaps for high-risk, marginalized populations with complex needs. We describe our navigation of existing and forged intersections to develop a strength-based and individualized approach to humanizing housing service delivery for individuals with fetal alcohol spectrum disorder (FASD). Our account is framed by four questions: why community and university partners came together to develop a responsive approach through the CanFASD network; who became key stakeholders in the partnership; how our humanizing housing approach is guiding the navigation of complexities inherent in service delivery for individuals with FASD; and what insights about creating intersections are we applying to our community-university partnerships.

Background and Objective: The manner in which language is used reflects how people in a society view one another. Historically, individuals with disabilities have experienced discrimination through the use of stereotypic or demeaning language. Individuals with Fetal Alcohol Spectrum Disorder (FASD) may be particularly susceptible to these negative impacts, particularly given the stigma associated with the disability. We discuss how individuals with disabilities may be affected by our use of language. Materials and Methods: Current definitions of FASD from Canadian provincial/territorial, national, and international governments and organizations were collated. Recent academic definitions found in the peer-reviewed literature were also reviewed. All definitions were independently coded by the two authors to identify definitions which were based upon current and emerging evidence and which included factual information about FASD. A standard definition of FASD was developed through an iterative process, including expert consultation and feedback from the larger FASD community Results: We propose an evidence-based, lay-language standard definition of FASD to be used in a Canadian context, intended to reflect the range of strengths and challenges of individuals with FASD as well as the whole-body implications of the disability. Conclusion: Our standard definition of FASD provides an opportunity to ensure consistency in language, increase awareness of FASD, promote dignity, and reduce stigma upon people with FASD and their families. We encourage governments, policy makers, service providers, and researchers to adopt the authors standard definition of FASD, with the goal of increasing awareness of FASD, reducing stigma, and improving communication and consistent messaging about the disability.

Background and Objective The manner in which language is used reflects how people in a society view one another. Historically, individuals with disabilities have experienced discrimination through the use of stereotypic or demeaning language. Individuals with Fetal Alcohol Spectrum Disorder (FASD) may be particularly susceptible to these negative impacts, particularly given the stigma associated with the disability. We discuss how individuals with disabilities may be affected by our use of language. Materials and Methods Current definitions of FASD from Canadian provincial/territorial, national, and international governments and organizations were collated. Recent academic definitions found in the peer-reviewed literature were also reviewed. All definitions were independently coded by the two authors to identify definitions which were based upon current and emerging evidence and which included factual information about FASD. A standard definition of FASD was developed through an iterative process, including expert consultation and feedback from the larger FASD community ResultsWe propose an evidence-based, lay-language standard definition of FASD to be used in a Canadian context, intended to reflect the range of strengths and challenges of individuals with FASD as well as the whole-body implications of the disability. Conclusion Our standard definition of FASD provides an opportunity to ensure consistency in language, increase awareness of FASD, promote dignity, and reduce stigma upon people with FASD and their families. We encourage governments, policy makers, service providers, and researchers to adopt the authors standard definition of FASD, with the goal of increasing awareness of FASD, reducing stigma, and improving communication and consistent messaging about the disability.

Fetal alcohol spectrum disorder (FASD) is a multifaceted disability, characterized not only by brain- and body-based challenges, but also high rates of environmental adversity, lifelong difficulties with daily living, and distinct sociocultural considerations. FASD is one of the most common neurodevelopmental disabilities in the Western world and associated with significant social and economic costs. It is important to understand the complexities of FASD and the ways in which FASD requires unique consideration in research, practice, and policy. In this article, we discuss our perspectives on factors that distinguish FASD from other disabilities in terms of complexity, co-occurrence, and magnitude. We provide an overview of select literature related to FASD as a socially rooted disability with intergenerational impacts and multiple layers of stigma. These social issues are intertwined with notable experiences of adversity across the lifespan and high rates of co-occurring health concerns for individuals with FASD, all of which present unique challenges for individuals, caregivers, families, service providers, and policy makers. Understanding these factors is the first step in developing and implementing specialized initiatives in support of positive outcomes for individuals with FASD and their families. Future directions are proposed for advancing research, practice, and policy, and responding to the unique complexities of FASD.