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.

Accessing Research to Inform our Practice and Policy

Our annual annotated list of research articles on FASD prevention is now available!

As in past years, we searched academic databases for articles about FASD prevention published in English over the past calendar year (in this case between January and December 2020). We organized the articles using the four-level prevention framework, so that those involved in FASD prevention can easily find and consider how to integrate current evidence relevant to their practice and policy work. 

This year, one hundred and three (n =103) articles were included, coming from 19 countries/regions.

  • 37 articles explored the prevalence of, and influences and factors associated with, alcohol use during pregnancy. Some factors influencing alcohol use in pregnancy described in these articles included depression, partners’ alcohol use, awareness of alcohol harms, awareness of pregnancy status, adverse childhood experiences, availability of support networks, concurrent tobacco smoking, and density of alcohol establishments.
  • 3 articles only focussed on awareness raising (Level 1).
  • 33 articles described aspects of brief intervention, education and support with women in childbearing years and their support networks (Level 2). Mixed results are still seen for brief interventions, but for some subgroups of women and dual interventions (alcohol + contraception) benefits were found.
  • 12 articles explored specialized, holistic support of pregnant women with alcohol and other health and social problems (Level 3), showing the importance of access to these programs and the need for collaboration in their delivery.
  • 7 articles described postpartum treatment and support approaches for new mothers and their children (Level 4), and promising approaches were described that included trauma informed and culturally grounded parenting programs.
  • 14 articles addressed overarching issues such as the impact of stigma, ethical issues and needed systemic approaches.

We encourage all those interested in FASD prevention to check out the articles for the area of FASD where they work, and in other areas of interest. We look forward to discussing key articles in the Prevention Network Action Team (pNAT) monthly web meetings as well. 

The role of Pregnancy Outreach Programs in preventing FASD

Pregnancy Outreach Programs (POPs) in British Columbia incorporate FASD prevention efforts in their community-based programming. While these programs do not necessarily advertise themselves as providing FASD prevention, their open, non-stigmatizing, and non-judgemental nature make them successful in offering brief support on a range of issues, including alcohol and other substance use.

There are over 70 local pregnancy outreach programs available across the province, including a number of programs that are funded through the Canada Prenatal Nutrition Programs (CPNP). These outreach programs provide support to high-risk pregnant women who are interested in accessing free and voluntary prenatal information and perinatal support services.

Originally, these programs were developed to improve the nutritional status of high-risk pregnant women who typically don’t access such information and services. They offer a variety of supports, often unique to the community that they serve. Some offer daytime support groups for parents and caregivers. Others offer nighttime events where participants get together for arts, crafts, and mocktails. Among other things, these programs provide women with free access to nutrition and health counselling; peer support groups; physical needs (i.e. food vouchers & prenatal vitamins); referrals to counselling services; supports to address issues with alcohol and/or substance use; and supports and resources to help care for their newborns. The diversity in what is offered and their dedication to meeting women where they’re currently at in their life is what makes these programs so effective.

Research shows that a helpful way to encourage disclosure about alcohol consumption during pregnancy is by using a conversational approach.  Approaches that are non-confrontational, women-centred, and recognize the social pressure that women may be experiencing are effective at opening “doorways to conversation.” These approaches allow providers to build relationships with their participants, creating a safe space to discuss risks of  alcohol and other substance use, and related challenges women face during their pregnancy. In providing a safe and non-judgemental environment that is based on building trust and relationships with women, the practice model of POPs providers fits with this best practice.

Facilitating understanding of FASD and brief support in POPs

Nancy Poole with Heather Cameron, BCPOPs Executive Director, at BCAPOP Annual Conference

The British Columbia Association of Pregnancy Outreach Programs (BCAPOP) is the provincial association for all of the pregnancy outreach programs (POP). Through their work, they provide a platform through which skills, supports, resources, expertise, and information can be shared. Their recent resource, BC Pregnancy Outreach Program Handbook Supplement on Perinatal Substance Use includes information on how to support women and girls facing substance use concerns in a trauma-informed way.  The content of this resource is being shared for free through in-person training throughout BC to over one hundred outreach workers by November 2019. BCAPOP also offered a workshop led by Myles Himmelreich at their recent annual conference in Richmond BC, to support understanding by POP workers of the realities of living with FASD.

Nancy Poole with Myles Himmelreich at BCAPOP Annual Conference.

The important role of social service providers in delivering effective brief interventions on alcohol and substance use, should not be ignored or underestimated. Outreach programs, including CPNP programs, offer a space that provides unconditional supports and resources for women, regardless of where they are at in their health or recovery journeys. We should look to the practice approaches modeled by these programs to find additional ways to meet community needs for action on FASD prevention and build programs that respond to the unique needs of each woman and each community.

Just published: 2019 edition of FASD Prevention Annotated Bibliography

AnnBib cover 2018Researchers associated with the Prevention Network Action Team (pNAT) of the CanFASD Research Network search the academic literature each year for articles related to prevention of fetal alcohol spectrum disorder (FASD). Articles are reviewed for relevancy, identified by topic and country, and the findings briefly summarized. This year’s Annotated Bibliography of Articles Published in 2018 was published in time for the 8th International Conference on FASD in March. A total of 58 articles were identified from 17 countries. The number of articles varies each year based on journal articles published in English about ongoing or new research on FASD prevention research. Countries with highest number of published articles in 2018 were USA (26 articles), Canada (9 articles), the UK and Ireland (6 articles), and Australia and South Africa (5 articles each). 

Findings are organized using a four-level prevention framework used by the pNAT to describe the wide range of work that comprises FASD prevention (see panel at left for more information). This year 15 articles pertained to Influences on women’s drinking;  12 articles pertained to Level 2, discussion of alcohol use with women and their support networks; and, 11 articles pertained to Level 3, specialized and holistic support of pregnant women. Articles pertaining to Level 1 and Prevalence of alcohol use in pregnancy were also well represented. Some articles are assigned to more than one category.

4-levels-fasd-prevention
Figure 1: Four Levels of FASD Prevention

The annual literature search is intended to update those involved in FASD prevention in Canada, to inform their practice and policy work with current evidence. The members of the pNAT also have the opportunity to discuss the implications for their work of the findings of selected articles, in monthly web meetings.

Find earlier Annotated Bibliographies below and on the CanFASD Prevention page under “Bibliographies”.

Four Levels of FASD Prevention 10 years On

In developing a panel presentation at the FASD International conference in 2007, Nancy Poole highlighted why the traditional “primary, secondary, and tertiary” model used for disease prevention did not fit as well for prevention of FASD. While designing that panel together with service providers and a birth mother to a child diagnosed with FASD, it dawned on Nancy and the panelists that FASD prevention wasn’t just about alcohol or pregnancy.

When asked to prepare a write-up of this emerging thinking for the Public Health Agency of Canada (PHAC), Poole assembled a group of 25 Canadian prevention specialists to collectively discuss and build the final 4 part model. It was published by PHAC in 2008 (see page 18 for the list of 25 co-developers – Full MODEL Here). The model illustrates how it is important to link mother child and community health in prevention, including continuing to support women and children past the perinatal period.

Over these last 10 years, this Canadian model has been adopted or built upon by FASD prevention specialists in Canada and a number of countries.

Figure 1: Four Levels of FASD Prevention

A recent article discussing what to do about high levels of alcohol use during pregnancy in the United Kingdom recommended the 4-level prevention model as a way to help women make informed decisions.

In Australia, Dr. James Fitzpatrick of Telethon Kids has used and built upon the multi-level model by showing how important it is to link, intervention, research and diagnosis to FASD prevention efforts (Figure 2). He has led community-based FASD prevention initiatives in remote parts of Western Australia that have significantly reduced alcohol use during pregnancy.

Figure 2: Adaptation of 4-Level Model of FASD Prevention by Dr. James Fitzpatrick, Telethon Kids, AU

Perhaps the model has influenced recent action plans regarding FASD, such as that of New Zealand. It emphasises the need for wrap-around services that pair women’s and children’s health including substance use services and treatment for pregnant and post-partum women. They also emphasize collaboration across sectors at the policy and community level.

Looking back, the 4-level prevention model was developed from the collective wisdom of researchers, service providers, policy analysts and birth mothers while implementing prevention initiatives in Canada. Further adaptations have included larger policy components that are key to prevention of alcohol problems. The development process of the model underscores how no one agency or approach can cover FASD prevention. It requires efforts in each of the levels, in ways that are mutually reinforcing.

For more on these topics, see earlier posts:

FASD PREVENTION WITH INDIGENOUS COMMUNITIES IN AUSTRALIA April 3, 2017

FASD PREVENTION CAMPAIGNS LINK TO SUPPORT January 29, 2018

BRIEF INTERVENTIONS TO DECREASE ALCOHOL MISUSE IN WOMEN November 26, 2013

HOLISTIC AND SPECIALIZED SUPPORT FOR PREGNANT WOMEN: LEVEL 3 PREVENTION November 21, 2016

THE MOTHERING PROJECT/MANITO IKWE KAGIIKWE IN WINNIPEG, MANITOBA May 1, 2015

INTEGRATING FASD PREVENTION AND ALCOHOL POLICY March 17, 2011

NEW ZEALAND’S NEW ACTION PLAN TO ADDRESS FASD September 17, 2016

Reflections on FASD Awareness Day — one community’s experience

This September 9th marks 19 years since the first International FASD Awareness Day. Building awareness is multi-faceted and, for long-time advocates of FASD prevention, it can seem that we take two steps forward and one step back.

We asked four members of our Network Action Team on FASD Prevention (pNAT) to reflect on the work they have done over the years in their community of Victoria, BC. They bring perspectives on how practice approaches, policy and research intersect to build effective FASD prevention efforts within the larger goal of supporting the health of women and families in general.

Many people, including health professionals, believe that there is a greater negative impact from opioid exposure rather than alcohol exposure. The current opioid crisis provides us with a unique opportunity for FASD prevention.
Lenora Marcellus — Associate Professor of Nursing, University of Victoria

I have had the opportunity over many years to work with Neonatal Intensive Care Unit teams related to supporting infants experiencing withdrawal from opioids. This issue has actually continued to grow related to the prescription opioid epidemic and fentanyl crisis that is impacting many communities, including here in British Columbia where the Provincial Medical Health Officer declared a public health emergency in 2016 in response to the rise in drug overdoses and deaths. What continues to surprise me in this work is how the issue of prenatal alcohol exposure rarely, if ever, comes into the conversation. Many people, including health professionals, believe that there is a greater negative impact from opioid exposure rather than alcohol exposure. The current opioid crisis provides us with a unique opportunity for FASD prevention . The strategies for supporting women during pregnancy, many developed by members of the pNAT, have been demonstrated in research to be effective, no matter the substance. I encourage you to partner with women, advocates and professionals in your community to highlight the importance of FASD prevention within the many conversations that are taking place about opioid use during pregnancy across Canada and beyond.

The proof is in – these kinds of wraparound programs that join a FASD-informed approach, with being culturally safe, trauma-informed and women-centred are successful and make a significant difference.
Amanda Seymour – Programming and Practice – Coordinator, HerWay Home

HerWay Home’s 5th Anniversary was earlier this year and I’ve been reflecting on how far the program has come since the visioning and advocacy done by community members leading to its opening in 2013. We have had the privilege of working with over 220 women and being allowed into their lives and that of their families. We have seen the impressive strides and successes the women have made and witnessed their love for and connection with their children. I’ve also reflected on how much more society needs to do. To prevent FASD along with the myriad harms from substance use and ongoing violence and trauma, we must address all the social determinants of health. Women report a positive change in their lives due to their connection with other women in the program, the support, trust and respect they receive from staff and the access to practical supports, health care and counselling. When I look forward to the next 5-10 years I would like to see programs like this one be available in many communities on Vancouver Island where I live, across BC and across Canada. The proof is in – these kinds of wraparound programs that join a FASD-informed approach, with being culturally safe, trauma-informed and women-centred are successful and make a significant difference. Women are able to reduce or abstain from substance use, improve their mental health and keep their children or see them returned to their care when they receive non-judgemental, harm reduction supports and tangible, practical help.

[We now have] … a set of Evaluation Maps to provide guidance and tools for developing, implementing and evaluating FASD-related programs (www.fasd-evaluation.ca).
Deborah Rutman – Principal and Co-Founder, Nota Bene Consulting Group & Adjunct Associate Professor, School of Social Work, University of Victoria

As a researcher and program evaluator, I feel immensely privileged to be able to learn about and report on the incredible work undertaken by staff at diverse FASD prevention programs and to hear women’s stories and experiences, including about what a tremendous difference these wrap-around programs such as HerWay Home make to women and their families. For me, one of the exciting opportunities – and one of the challenges – of evaluating FASD prevention programs is depicting the complexities associated with FASD and FASD-related programming: complexities in terms of the inter-related issues that women and families struggle with; complexities in terms of the range of services and program activities that matter to women; and complexities in terms of the myriad program outcomes that, as evaluators, it is important to document, including: women feeling safe and not judged; women having improved basic needs support, nutrition and safe housing; healthy births; reduced child welfare involvement; increased mother-child connection; abstinence/reduced or safer substance use; and women’s sense of connection and hope. Several years ago, our Nota Bene team, partnering with Nancy and with lots of input from pNAT members, developed a set of Evaluation Maps to provide guidance and tools for developing, implementing and evaluating FASD-related programs. Currently, with funding from the Public Health Agency of Canada and in partnership with eight inspiring programs across the country, our team is undertaking the Co-Creating Evidence study: a ‘first in Canada’ national evaluation of wrap-around programs that work with pregnant or recently parenting women with substance use and other complex issues. We have just completed our first round of data collection at all eight sites and we look forward to sharing our findings with NAT members – and beyond – in the coming months.

It so gratifying that for a decade now, we in Canada have been able to meet virtually in this pNAT to share ideas and identify ways to collaborate on research, practice and policy related to alcohol and FASD prevention.
Nancy Poole – Researcher and Knowledge Translation – Director, Centre of Excellence for Women’s Health

Every time International FASD Day comes around, I think both of the tremendous work people are doing on FASD prevention and how much there still is to do. I am so lucky to have colleagues like Lenora, Deborah and Amanda who are committed to FASD prevention in my own city! We get together over dinner fairly regularly to talk about how our work fits together, and how we can actively work together in various combinations to advance FASD prevention research, practice and policy. In particular, we have been able to lend lots of support to the establishment and ongoing enhancement of programming at HerWay Home. Amanda, Deborah and Lenora have also been core members in our national work on FASD prevention where we link and advance the work on research, evaluation, practice and policy through the Network Action Team on FASD Prevention (pNAT) that is funded by the CanFASD Research Network. It so gratifying that for a decade now, we in Canada have been able to meet virtually in this pNAT to share ideas and identify ways to collaborate on research, practice and policy related to alcohol and FASD prevention .

“FASD Awareness” – what does that mean?

September 9th will mark almost two decades since the first FASD Awareness Day. Communities and organizations around the world are planning events and media campaigns to raise awareness. But what does “FASD awareness” actually mean? The answer is that FASD awareness is multi-layered.

It means AWARENESS that Fetal Alcohol Spectrum Disorder is a disability caused by prenatal alcohol exposure and has a range of effects that are lifelong and varied.

It means AWARENESS that for women, alcohol consumption has particular risks.

It means AWARENESS that there is no known safe amount of alcohol consumption or safe time to drink during pregnancy and while breastfeeding. Without knowing how much or how little alcohol can cause FASD, there is always a risk.

It means AWARENESS that there are many reasons why a woman might drink during pregnancy and that women deserve information and support, not blame and stigma.

It means AWARENESS that FASD is a primary disability that affects individuals differently and can lead to secondary disabilities, particularly if undiagnosed.

It means AWARENESS that people living with FASD have both strengths and challenges, and they and their caregivers deserve and benefit from respect, support and resources.

It means AWARENESS that there are ways for everyone to take part in prevention and intervention efforts.

It means AWARENESS that research continues and there is hope.

Share your photos and videos with CanFASD on social media to raise awareness about FASD! Use #FASDAwarenessDay #CanFASD to WIN Great Prizes! On Facebook and Twitter @CanFASD

New Annotated Bibliography of 2017 Articles on FASD Prevention

Each year since 2013, researchers associated with the Prevention Network Action Team (pNAT) of the CanFASD Research Network search the academic literature for articles related to prevention of fetal alcohol spectrum disorder (FASD). Articles are reviewed for relevancy, identified by topic and country, and the findings briefly summarized. For this year’s Annotated Bibliography of Articles Published in 2017, a total of 113 articles were identified from 17 countries. Countries with highest number of published articles were USA, (51 articles) Canada (26 articles), Australia (10 articles).

Findings are organized using a four-level prevention framework used by the pNAT to describe the wide range of work that comprises FASD prevention (see panel at left for more information). This year a record 32 articles pertained to Level 2 which involves discussion of alcohol use with all women of childbearing age and their partners/support systems. Articles pertaining to Prevalence of alcohol use in pregnancy, Influences on women’s drinking, and Preconception interventions were also well represented.

The annual literature search is intended to update those involved in FASD prevention in Canada, to inform their practice and policy work with current evidence. The members of the pNAT also have the opportunity to discuss the implications for their work of the findings of selected articles, in monthly web meetings.

Find earlier Annotated Bibliographies below and on the CanFASD Prevention page under “Bibliographies”.


FASD Prevention: An Annotated Bibliography of articles published in 2016

FASD Prevention: An Annotated Bibliography of articles published in 2015

FASD Prevention: An Annotated Bibliography of articles published in 2014

FASD Prevention: An Annotated Bibliography of articles published in 2013

Is FASD really 100% preventable?

A lot of progress has been made on effective FASD awareness and prevention strategies. Early efforts often used disrespectful tactics like unsettling pictures of women slugging down alcohol from a bottle while pregnant with a caption such as “Baby or the Bottle.” Those approaches have largely been abandoned. But one overly simple statement still pops up. And that is, “FASD is 100% Preventable.”

That statement is misleading because it suggests that FASD prevention is unidimensional and linked only to alcohol consumption. But alcohol use during pregnancy is linked to the social determinants of health, and its effects can be exacerbated by food insecurity, trauma, poverty and multi-substance use. It also suggests that stopping drinking is a simple choice. It puts the onus on the individual woman to make that choice and contributes to shame if they do not stop before they become pregnant. But in reality, there are many influences on women’s alcohol use, and real challenges to quitting before you know you are pregnant. Indeed, almost half of pregnancies are unplanned, so it is very challenging to be alcohol free before a pregnancy is confirmed.

In the case of other substances like tobacco or prescription painkillers, the public discourse extends beyond the individual user to corporate responsibilities, physicians and health authorities to provide harm reduction and treatment programs, and of governments to provide regulation and enforcement and policies that work toward social equity.

If we extend this perspective to alcohol use during pregnancy, we must speak about the responsibilities of the alcohol industry for targeting girls and women of childbearing age, and of health providers for providing comprehensive education and brief support during the preconception and prenatal periods. We must also consider the responsibilities of health services for providing integrated treatment programs for pregnant and parenting women; and of governments for ensuring gender equity and preventing violence against women.

Theoretically, stopping alcohol use in pregnancy, or ideally, before, sounds simple – just do it. But it takes a lot of individuals and sectors to do their part to make it realizable.  Simplifying it to statements like “FASD is 100% preventable” is not the best approach.

These previous blogs illustrate the full context of FASD and prevention approaches.

HOUSING IS KEY COMPONENT TO WOMEN’S RECOVERY, August 19, 2017

TARGETING STIGMA AND FASD IN MANITOBA, June 26, 2017

HEAVY DRINKING AMONG WOMEN: NORMALISING, MORALISING AND THE FACTS, Jan 24, 2017

FASD IS A PUBLIC SAFETY AND JUSTICE PRIORITY FOR ABORIGINAL GROUPS, October 23, 2016

HOW DO PARTNERS AFFECT WOMEN’S ALCOHOL USE DURING PREGNANCY? August 11, 2014

 

Indigenous Approaches to FASD Prevention – A response to TRC Call-to-Action #33

 

Brief Interventions

Indigenous Mothering

Welness

Community Action

Reconciliation & Healing
Five new booklets on Indigenous Approaches to FASD Prevention have just been published. They were developed  following the Dialogue to Action on Prevention of FASD meeting in May 2017, and reflect the 8 tenets of the Consensus Statement created by participants for enacting the Truth and Reconciliation Commission of Canada Call-to-Action #33:

“We call upon the federal, provincial, and territorial governments to recognize as a high priority the need to address and prevent Fetal Alcohol Spectrum Disorder (FASD), and to develop, in collaboration with Aboriginal people, FASD preventive programs that can be delivered in a culturally appropriate manner.” – Truth and Reconciliation Commission of Canada

The booklets were written by Tasnim Nathoo and Nancy Poole of the Centre of Excellence for Women’s Health in collaboration with the Thunderbird Partnership Foundation, and Canada FASD Research Network. Topics include: Brief Interventions with Girls and Women, Mothering, Wellness, Community Action, and Reconciliation and Healing. Printed booklets are being shared with those who attended the meeting in May and with Indigenous communities who may find them helpful as they plan FASD prevention efforts. Links to PDF versions are included in this blog.

Grounded in research, the booklets prioritize Indigenous knowledge for implementing culturally-safe, cross-disciplinary, cross-organizational, and collaborative approaches to FASD prevention. As well, each booklet offers discussion questions that shift the lens from a primary focus on alcohol use during pregnancy, to a holistic focus that aligns with Indigenous values and worldviews to support change and transformation in all systems of care.

The Truth and Reconciliation Commission of Canada (TRC) provided a process for discovering the harms and injustices that Aboriginal people experienced as part of the Indian Residential School system with an aim to build a lasting and respectful foundation of reconciliation across Canada. TRC findings were released in 2015 along with 94 Calls-To-Action (CTA), including CTA #33, which focuses on FASD prevention.

 

See earlier posts on these topics:

DEVELOPING AN INDIGENOUS APPROACH TO FASD PREVENTION IN BC’S FRASER SALISH REGION December 11, 2017

INNU COMMUNITY FASD PREVENTION IN LABRADOR October 27, 2017

FASD PREVENTION WITH INDIGENOUS COMMUNITIES IN AUSTRALIA April 3, 2017

THE MOTHERING PROJECT/MANITO IKWE KAGIIKWE IN WINNIPEG, MANITOBA May 1, 2015

POSTCOLONIAL THEORY FOR BEGINNERS
September 1, 2010