FASD Prevention: An Annotated Bibliography of Articles Published in 2022

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This year’s Annotated Bibliography of Articles Published in 2022 was just released and includes 113 articles from 33 countries.

Each year, researchers associated with the Prevention Network Action Team (pNAT) of the Canada FASD Research Network search the academic literature for articles related to alcohol use in pregnancy and Fetal Alcohol Spectrum Disorder (FASD) prevention. Articles are reviewed for relevancy, identified by topic and country, and the findings are summarized.

Countries with the highest number of articles published were the US (44 articles), Australia (25 articles), Canada (16 articles), and the UK (13 articles). The findings were organized using a four-part prevention model (below) used by the pNAT to describe the wide range of work that comprises FASD prevention. This year, 48 articles described the prevalence, influences, and factors associated with alcohol use in pregnancy, 12 articles described Level 1 prevention efforts, 32 articles described Level 2 prevention efforts, 13 articles described Level 3 prevention efforts, 13 articles described Level 4 prevention efforts, and 13 articles described stigma, ethical issues, and systemic approaches.

Canada’s 4-part prevention model

This year we created a category that includes articles describing supportive alcohol and child welfare policy, in which 11 articles were included. An article in this section described the benefits of the Plans of Safe Care initiative (covered in a previous blog), where nearly 90% of participant families were found to avoid out-of-home-placement, illustrating how this program fosters support and creates protective linkages to community-based programs for infants prenatally exposed to substances and their families.

This year, we also saw a shift in how technology was described. In previous years, articles largely spoke to how technology can be used in Level 1 and Level 2 prevention efforts. However, this year, we saw technology also being described in Level 3 and 4 efforts. One study described a virtual peer support program where participants found the virtual space to be a comfortable and safe space where they were able to develop community.

A number of articles considered issues and practices related to screening for alcohol use in the perinatal period. One study captured women’s preferences for specific screening tools (such as the 4P’s Plus), and another explored barriers to disclosure of alcohol use and how health professionals can mitigate these through relational practice.

Consistent with previous years, several studies reported the efficacy of brief interventions. Brief interventions developed by/with Indigenous communities were described, including a mobile health one. And in this year’s bibliography, there was more research on the use, barriers and benefits of brief interventions delivered by a range of providers including physicians, nurses, midwives, pharmacists, and nutritionists. 

The annual literature search is intended to update those involved in FASD prevention in Canada, so that their practice and policy work may be informed by current evidence. The members of the pNAT also have the opportunity in monthly web meetings to discuss the implications of the findings for their work. You can access the annotated bibliography here, and view previous annotated bibliographies here.

Cultural programming is integral to wraparound support

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A Mustard Seed of Hope is a beautiful new booklet describing culturally grounded approaches within wraparound care for pregnant and parenting women who are dealing with substance use and trauma.

It describes the Indigenous cultural programming that is being offered in some wraparound programs, to honour this work and to inspire others who provide community-based services to take up/expand upon these approaches.

The title comes from one of the mothers who spoke of the caring, non-judgemental wraparound supports that allowed her to see hope in being able to keep her baby and be a good mom.  All she needed was that “mustard seed of hope” to keep coming to the program for the supports and services.

The cultural programming of three wraparound programs – Sheway, the Healthy Empowered Resilient (H.E.R) Pregnancy Program and Manito Ikwe Kagiikwe (Mothering project) – are highlighted.  Beautiful photos and descriptions of their culturally grounded approaches are offered as inspiration.

The booklet ends with a powerful description of how culturally safe approaches and Indigenous cultural programming make a difference for women.  The quotes and images of those who have benefitted from this programming are well worth reading.

The booklet represents a thank you to the women who accessed, and the service providers who provided, wraparound programming in the Co-Creating Evidence project.

Thanks are also due to Marilyn Van Bibber for her commitment to this work and her conception of this booklet.

Funding for this booklet and the Co-Creating Evidence project has been received from the Public Health Agency of Canada, National FASD Strategic Project Fund.  The views expressed here do not necessarily represent the views of the Public Health Agency of Canada.

The Legacy of the Co-Creating Evidence Project

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The Co-Creating Evidence (CCE) Project has been a first-of-its-kind-in-Canada national evaluation involving 8 different programs serving women at high risk of having an infant with FASD or prenatal substance exposure.

The goals have been to:

• Bring together many of Canada’s holistic FASD prevention programs to share promising approaches and practices;
• Evaluate the effectiveness of multi-service programs serving women with substance use and complex issues;
• Identify characteristics that make these programs successful.

Representatives of the eight programs and researchers from Note Bene Consulting Group and the Centre of Excellence for Women’s Health have collaborated since 2017 to achieve the following:

The 8 programs involved in the CCE Project.

• 256 program participant interviews, 108 staff interviews, and 60 interviews with community partners of the services
• A detailed report of all study findings (96 pages) for all audiences
• 12 info sheets on key components found to be helpful, to support the work of service providers
• 4 journal articles, to bring awareness of the findings to researchers and health system planners
• Webinars to share what was learned
• A booklet on culturally grounded approaches within wraparound programs for all audiences (24 pages)
• A digital handbook highlighting key components of wraparound programming found to be helpful, for service providers and peer mentors wishing to start a wraparound program or enhance the work they already offering

Wraparound services offered by the 8 programs participating in the Co-Creating Evidence project

The 8 programs were guided by a similar set of theoretical approaches, including being trauma-informed, relationship-based, women-centred, culturally-grounded, and harm-reducing.

The range of services offered by wraparound services is key for women in finding what works for them, and in having the opportunity to choose the order and pace of services they will use.

The study has demonstrated that pregnant and early parenting women experiencing problematic substance use and other complex issues benefit from programs that include: Wraparound services – Knowledgeable and empathetic program staff – Indigenous (re)connection – Opportunities for community/peer support.

Further, the following elements are important characteristics that contributed to the programs’ success: Well conceptualized, evidence-based approaches – Strong partnership relationships – Flexible, multi-dimensional models – Keeping clients engaged over time.

The Digital Handbook on Wraparound Programs is a key legacy of the CCE Project. The handbook was developed with multiple audiences in mind, including program planners, managers and staff, service partners from a variety of health and social sectors, funders, researchers, community members, and families affected by perinatal substance use.

The Handbook is a remarkable, accessible collection of resources about:

• Relationship-based practice
• Trauma- informed approaches
• Culturally safe care
• Harm reduction approaches
• FASD informed approaches
• Indigenous cultural programming

• Attachment focused practice
• Transitioning from wraparound services
• Building partnerships
• Cross sectoral work
• Wraparound programs as good investments
• Data collection approaches and more

Opening page of Topic 14 in the digital handbook

The Handbook supports one of the implications arising from the study:

“Ongoing learning opportunities, focusing on integrated, culturally grounded, trauma informed, relational practice, are important to practitioners in all fields and need to be actively supported.”

See the Executive Summary of the Co-Creating Evidence Evaluation Report for all the implications identified: 6 directed to practitioners, 5 for health system planners, and 6 government policy makers and funders.

Next month’s blog will feature, A Mustard Seed of Hope, a booklet created through the CCE Project about culturally grounded approaches within wraparound care for Indigenous pregnant and parenting women dealing with substance use and trauma.

Funding for this project was received from the Public Health Agency of Canada.  The views expressed do not necessarily represent the views of the Public Health Agency of Canada.

Preconception Resources: Increasing Awareness about Alcohol and Pregnancy

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Preconception care is part of a continuum of support that promotes health during the reproductive years: for young girls and women who may be drinking alcohol without using effective contraception, those who are planning a pregnancy, and people in the interconception periods. Preconception care includes health promotion, education and counselling support that may have a focus on: protection (i.e., folic acid supplementation), avoiding harms (i.e., of alcohol use during pregnancy), and/or managing conditions (i.e., diabetes).

Discussing substance use in the preconception period can encourage reduction in alcohol and other substance use before and during pregnancy.  For example, pre-pregnancy alcohol use is a predictor of alcohol use during pregnancy and smoking fewer cigarettes pre pregnancy is a predictor of quitting smoking during pregnancy. Despite the importance of reaching women in the preconception period, efforts to do so have not always been prioritized by our health systems or in training to health and social service providers.

Two booklets designed to promote preconception care

In response to this gap in resources for people planning a pregnancy, the Centre of Excellence for Women’s Health and Canada FASD Research Network recently developed Thinking About Pregnancy: A Booklet to Reflect on Alcohol Use Before You are Pregnant. The booklet recognizes women’s agency and interest in learning more about supporting a healthy pregnancy. As such, we translated what we know as researchers into an accessible booklet for women that they can use independently or walk through with their partner(s) and healthcare providers when thinking about or planning a pregnancy.

Included in the booklet is information about standard drink sizes, why thinking about alcohol before you are pregnant is important, mocktail recipes and activities that help women reflect on what they like or dislike about drinking, what alternatives to alcohol use may be in their ‘toolbox’ and who is and will be by their side as they make change.

Project CHOICES in Manitoba offers another booklet that aligns with and complements Thinking About Pregnancy. While Thinking About Pregnancy is geared towards people who are planning a pregnancy, Project Choices: Alcohol and Sex Deserves a Discussion (available in French here) is geared towards youth and young adults who drink alcohol, are having sex, and want more information about alcohol use and birth control.

The booklet contains information on alcohol, contraception, and consent, and includes a number of self-reflection, goal setting and mindfulness activities that can help decrease alcohol use and/or increase contraception use and safe sex. Although the booklet can be used as a stand-alone resource, counsellors in the Project CHOICES program also use this booklet to educate participants about alcohol use, birth control, FASD, and support participants towards healthy goal-setting.

These booklets are designed to be accessible for girls, women and gender diverse individuals in reproductive years. Turning more attention to preconception care offers an opportunity to promote and empower health and wellbeing, while simultaneously contributing to the prevention of FASD.

Prevention Conversation: A Shared Responsibility

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The Prevention Conversation is an online training program for health and social service providers to increase their knowledge about alcohol and other substance use in pregnancy and provide them with the skills to have safe and impactful conversations with women and people of child-bearing age and their support networks. The Prevention Conversation recognizes that these conversations are central to ensuring that families and communities know about the risks of drinking alcohol during pregnancy and feel supported in sharing the responsibility to reduce the harms of alcohol.

In Autumn 2022, the Canada FASD Research Network released an updated version of the online course to reflect the most recent research on FASD prevention and best meet the needs of diverse communities who are accessing prevention resources.

The updated course:

• Features best practice and updated evidence, wisdom, and language around alcohol use in pregnancy;
• Includes new modules on stigma reduction, alcohol and women’s health, and cultural safety and humility;
• Incorporates reflection questions that encourage course takers to reflect on how they can support women and people in the childbearing years in their local context and with the resources available to them;
• Includes new resources and content to support a range of practitioners working in different practice settings; and,
• Incorporates diverse peoples and knowledge systems through the addition of new content and artwork from Indigenous artists across Turtle Island. Art pieces from Indigenous artists, such as Cody Houle (see below), introduce every module, as a way to honour Indigenous knowledge systems and capture the spiritual, relational, and emotional connections to the modules. 

“Surrounded by Love” by Cody Houle introduces Module 5: Raising Awareness and Stigma Reduction. You can find his description of the piece in the online course.

The updated course follows the Four-Part Model of FASD Prevention to provide formative knowledge about alcohol and women’s health, FASD prevention and healthy beginnings, stigma reduction, cultural safety and humility, and trauma-informed practice. These modules can further facilitate open, respectful and non-judgemental conversations with women and their partners by a range of health and social service providers.

The Prevention Conversation is available online through the CanFASD e-store or can be delivered in-person in Alberta through the Prevention Conversation.

Staying Principled

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In 2009 a group of women gathered in Victoria BC Canada to discuss how we would approach the development of a network on FASD prevention. We were researchers, policy advocates, service providers, community activists and those with Indigenous wisdom – all with a commitment to seeing and acting on how social determinants affect women’s health and substance use, and the ability for them influence the conditions of their lives.

Out of our discussion emerged a consensus on 10 fundamental components or principles for approaching FASD prevention from a women’s health determinants perspective. Now, in 2022, we have updated that consensus statement, so that those interested in FASD prevention are directed to new evidence and resources. The update is a testament to the soundness of the original principles and to the ever-growing expertise of the network participants and international partners. We hope this will empower those working on FASD prevention to continue to use and build upon this principle-based approach.

The principles foundational to approaching FASD prevention are:

Respectful – Grounding prevention initiatives in respectful relationships is vital to reduce stigma and discrimination.

Relational – It can be a transformative experience for women who use substances to experience care that aligns with their needs, views them as a whole person, and offers respect, understanding, and authentic collaboration.

Self-Determining – Health care and other support systems can facilitate self-determined care by supporting women’s autonomy, decision making, control of resources, and including exercise of their reproductive rights.

Women+ Centred – Women+ centered care moves beyond a fetus/child-centered approach, and focuses on fostering safety and empowerment when providing support to women and gender diverse individuals who are pregnant or parenting.

Harm Reduction Oriented – A harm reduction oriented approach focuses on safer substance use but also on reducing broader harms, including retaining or regaining custody of children, access to adequate and stable housing, and the challenges of poverty, food insecurity, and intimate partner violence.

Trauma- and Violence-Informed – Trauma- and violence-informed services integrate awareness of the impacts of trauma on health into all aspects of service delivery including wellness support and prevention of secondary trauma.

Health Promoting – Holistic, health promoting responses to the complex and interconnected influences on women’s health and substance use are vital to FASD prevention.

Culturally Safe – Respect for individuals’ values, worldviews, and preferences in any service encounter is important, as is respect for and accommodation of a woman’s desire for culturally-specific healing.

Supportive of Mothering – FASD prevention efforts must recognize women’s desire to be good mothers and the importance of supporting women’s choices and roles as mothers.

Uses a FASD-informed and Disability Lens – Uses strengths-based responses, makes person-centered accommodations, and ensures equity of access to health and social services.

We hope you will find the Consensus Statement with these principles and supporting sources – journal articles, reports and infographics – an inspiration for action.

Every Moment Matters – An evidence-based FASD prevention campaign for Australia

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Every Moment Matters is a nation-wide health promotion campaign launched in Australia which shares the latest evidence-based information about alcohol during pregnancy and breastfeeding. See www.everymomentmatters.org.au/.

The messages

The messages about alcohol use in pregnancy and FASD include:

• Every moment matters when it comes to alcohol – whether you are planning a pregnancy, currently pregnant or breastfeeding.

• Planning a pregnancy is an exciting time. It’s also a great opportunity to go alcohol-free. Make the moment you start trying the moment to stop drinking alcohol.
  • The “planning a pregnancy” section includes
    • information about how alcohol affects fertility, the risk for miscarriage, and how the placenta is not a barrier to alcohol
    • ideas for action, when sharing information with friends, and finding help

• All parents want to give their baby the best start in life, which is why it’s important not to drink any alcohol during pregnancy.
  • The “currently pregnant” section includes
    • information about how alcohol passes directly to the developing baby and can damage their brain, body and organs (FASD)
    • ideas for action to garner support from partners friends and family and for talking to a doctor, midwife or obstetrician

• When breastfeeding, not drinking alcohol is safest for the health of your baby.
  • The “when breastfeeding” section includes
    • information about how alcohol enters breastmilk, noting how when there is alcohol in one’s blood, it is also in their breastmilk
    • strategies to avoid exposure when a choice is made to drink alcohol while breastfeeding

All sections of the website contain many helpful facts about alcohol and pregnancy and breastfeeding, how women can make a change in alcohol use, and how to support someone who is pregnant or planning a pregnancy. And there are links to a multitude of resources: www.everymomentmatters.org.au/resources/

The underlying research

This campaign has the most solid background research of any undertaken to date. The Foundation for Alcohol Research and Education (FARE) commissioned research to ground the campaign that involved:

• A literature review and review of previous campaigns implemented in countries around the world, in order to establish best practice approaches to a campaign such as this.
• Research to understand attitudes, perceptions of risk, and understanding of the issues by people in Australia, to identify potentially effective messages and framing of messages. This research included women who were pregnant, planning a pregnancy (in the next 2 years) or who might become pregnant, through an online survey, virtual focus group discussions, online journey mapping forums and virtual in-depth interviews.

Very comprehensive findings from this research guided the creation and testing of messaging for the campaign so that the messages would ‘grab attention’, contain information that was personally relevant to various segments of the population and be persuasive so that women would avoid alcohol during pregnancy.

Learn more about the research and its impact

The sponsors of the campaign, FARE, are hosting a webinar on Dec 8^th (in Australia) entitled Behind the Scenes of Every Moment Matters where they will explore some of the key elements of this ground-breaking national health promotion campaign. Members of the campaign team will share insights into the formative research, message testing, creative approach, media strategy, engagement of health professionals in the campaign, and its impact to date.

This event is for people working in health promotion, public health policy, social marketing, the alcohol and other drugs sector, behaviour change, or evaluation design. 

See https://www.eventbrite.com.au/e/behind-the-scenes-of-every-moment-matters-tickets-439430427237

Actionable research! Reflecting on 5 years of FASD prevention research

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Last month, the Journal of Fetal Alcohol Spectrum Disorder (FASD) released a special collection of articles about FASD prevention, diagnosis, intervention and support. The journal issue features the work of Canada Fetal Alcohol Spectrum Disorder Research Network staff, Research Leads, Family Advisory Committee (FAC) members, Adults with FASD Expert Collaboration Team (AFECT) members, trainees, board members, and community partners and collaborators. 

As part of the special issue, researchers from the Prevention Network Action Team contributed an article entitled At a Juncture: Exploring Patterns and Trends in FASD Prevention Research from 2015 – 2021 Using the Four-Part Model of Prevention. This article leverages off our annual annotated bibliographies, to identify trends in FASD prevention research over the six-year period.

From 2015 – 2020, n = 532 articles were identified that addressed:

1. the prevalence and influences on alcohol use during pregnancy, 
2. interventions at each of the Four-Part Prevention Model, and 
3. systemic, destigmatizing, and ethical considerations. 

The majority of the research was from the United States (n = 216), Canada (n = 91), the United Kingdom (n = 60), and Australia (n = 58).

While the literature continues to have a heavy focus on the prevalence and influences on alcohol use during pregnancy, a trend could be seen towards research on evidence-based interventions which support positive health outcomes for women and their children.

• Across both Level 1 and Level 2 prevention, there was an emphasis on the role of technology and its importance in disseminating education and messaging about alcohol use in pregnancy and FASD. 
• Attention to Levels 3 and 4 demonstrated the importance of multi-service, trauma-informed, relational, and holistic approaches in supporting women and their children. 
• While women’s voices were increasingly represented in the literature, further efforts are required to amplify their voices and address stigma. 

This review synthesized the current evidence and demonstrated how the work on FASD prevention has expanded in the recent years to reflect the nuance and interconnectedness of the Four-Part Prevention Model. The opportunities for prevention through research and evidenced-informed practice and policy are unlimited. We used the title “At a Juncture” as now we can definitely see a critical mass of research evidence on FASD prevention that can support practice and policy action related to awareness raising, brief support, wrap-around support, stigma reduction and change to alcohol policy!

FASD AWARENESS DAY 2022

It’s International FASD Awareness Day on September 9. We have now recognized this Day for over 20 years and it is heartening to see how many organizations and communities across Canada are now offering events and sharing resources that both honour the strengths of those with the disability and build awareness of the risks of drinking alcohol in pregnancy. One notable addition to this year’s events is that many landmarks and monuments across Canada will be lit up in red as part of CanFASD’s campaign, which focuses this year on building strengths and abilities.

As a part of our work to raise awareness about FASD prevention, we have updated an infographic about what we know about alcohol and pregnancy. It is based both in research and in the multi-level work of national, provincial, and local organizations working on FASD prevention. It points to:

• How women both deserve and benefit from information and support when making decisions about drinking before and during pregnancy.
• How reducing stigma about drinking is one key way of opening up the possibilities for women to access the information and support they need.
• How service providers have a prime responsibility in FASD prevention by:
  • Sharing informational materials, working collaboratively, and supporting connections to needed supports.
  • Engaging in non-judgemental and encouraging conversations about alcohol and associated risks.
  • Linking women to community-based programs that offer holistic support on alcohol use, other aspects of health, and practical needs.

The infographic offers links to excellent resources developed by Pauktuutit Inuit Women of Canada, the Saskatchewan Prevention Institute, organizations offering culture driven programming in 7 Indigenous communities, and the Co-Creating Evidence Project’s research on wraparound programming. The Centre of Excellence for Women’s Health is grateful to the CanFASD Research Network for providing the funding that affords us opportunity to bring attention to these FASD prevention efforts in Canada in this way. 

Prompting International Collaboration through an International Seminar Series on FASD Prevention

Research about preventing FASD is advancing across the globe and it is important that it be shared and acted upon. We see from our annual annotated bibliographies the amazing international work happening on the many levels of prevention – on awareness building approaches, on safe and respectful conversations about alcohol use with pregnant women, and on holistic support services for pregnant women and new mothers’ experiences of alcohol problems and other health and social concerns.

Leveraging off the work of researchers in Canada and internationally, the Canada FASD Research Network has sponsored a five-part seminar series bringing together 14 researchers from across the globe to share what is known about preventing alcohol use in pregnancy and supporting women’s health.

The five-part seminar series focuses on destigmatizing considerations, frameworks for FASD prevention, awareness raising and community development. Throughout the series, researchers from Canada, Australia, South Africa, USA, and New Zealand shared evidence on:

• The role and implications of stigma and FASD prevention efforts;
• Different frameworks for FASD prevention, including the four-part model of FASD prevention and holistic community-based prevention efforts;
• The development of FASD prevention guidelines;
• The ways to communicate information about alcohol use in pregnancy and FASD prevention;
• How to have collaborative conversations around alcohol and other substances during pregnancy – and the ways to translate perceptions of alcohol risks into successful interventions; and,
• Programs for pregnant and postpartum women and gender diverse individuals who use substances and their children.

This seminar series prompted collaboration in ways that historically have only been done at in-person conferences. Each seminar can be viewed in its entirety or as individual presentations. The goal is to provide service providers and leaders across the globe with user friendly access to FASD prevention research to inform their work when delivering and funding prevention efforts.

Through the international seminar series, we hope to make it possible for all countries to have access to what is known about preventing alcohol use in pregnancy.

We hope you will check out the seminar series available on the CanFASD YouTube page and prevention tab of the website.