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.
There are many influences, stressors and life circumstances that affect pregnant women’s and new mothers’ alcohol use, yet few so challenging and heartbreaking as the experience of intimate partner violence (IPV) and other forms of abuse.
Holistic community-based programs that aim to engage pregnant women and gender diverse individuals with lived experience of violence are challenged to help everyone feel safe, and to access the services that they and their children need. In many ways the overall service approaches of these programs – being harm reduction oriented, non-judgemental, culturally safe and trauma informed – go a long way towards creating the needed safety and support.
The Breaking the Cycle (BTC) program in Toronto took on the role of assisting community based programs that work with families who may be living with IPV, to articulate and enhance their support approaches. BTC received a grant from the Public Health Agency of Canada to develop and share with over 800 programs across Canada, both a resource manual (Building Connections: Supporting Community-Based Programs to Address Interpersonal Violence and Child Maltreatment) and training that helped these programs build further awareness of IPV and their capacity to deliver trauma informed approaches. Connections is a manualized group intervention that supports increased understanding by mothers about positive relationships and their importance to healthy parenting and healthy child development. This work illustrates BTC’s ever growing understanding of the many impacts of trauma on mothers and their children, and the importance of embedding trauma-informed approaches in the delivery of addiction, mothering and early childhood intervention services.
The Breaking the Cycle program recently published the findings arising from the evaluation of this work in the document “What we Learned”. It documents the impact on: women who participated in the Connections groups, the group facilitators, other staff in the prenatal and child development organizations who engaged in the training and group delivery, and the organizations as a whole. Really compelling is the section on how women increased awareness of the impact of abuse, of children’s brain development, and of positive and mindful parenting; as well as their changes related to forgiveness and healing, self-care, self-esteem and empowerment. The facilitators also benefitted immensely in awareness, competency and overall through integrating and advocating for trauma-informed perspectives in their daily working relationships. The document is rich in detail about the impact of this important work to address intimate partner violence through relational and trauma informed approaches in community-based services, including Indigenous specific services.
Key to what they learned, Breaking the Cycle identified 4 fundamental practice principles which are definitely relevant to all the work we do on FASD prevention and intimate partner violence:
Readiness is critical. There is background work that must be done first, before a group like Connections that addresses trauma can be implemented.
Safety is vital. Trauma-informed principles must be established and integrated into your organizational practices before women will feel safe enough to get involved with Connections.
Relationships are the building blocks of engagement. Women who experience IPV have limited experience of supportive relationships and find building safe and healthy relationships with others, including their children, difficult. It is imperative that service providers model supportive relationships during the implementation of Connections.
Research and evaluation are critical components of all programs, with co-occurring commitment to respect community wisdom. The commitment to research and evaluation needs to be accompanied by a flexible group approach for participating organizations who know the needs of their communities best.
These lessons are a tremendous gift to all service providers who take on this important work. Much appreciated Breaking the Cycle!
Over the past three years, the Co-Creating Evidence study (CCE) has been exploring best practices in the delivery of community-based wraparound programs that support pregnant and parenting women with substance use concerns in Canada. The CCE team recently published an article about how the partnerships fostered and maintained by community-based wraparound programs make a difference in their work and are in fact a best practice.
The CCE project team interviewed 60 partners and 108 staff of the eight programs involved in the CCE study. The interviews focused on the nature and benefits of interagency and cross-sectoral partnerships. The study found that these programs most commonly formed partnerships with child welfare and health services such as primary care, public health, mental health services and maternal addictions programmes, yet they also partnered to some degree with housing, income assistance, Indigenous cultural programming, infant development and legal services.
Key benefits of partnerships identified were:
improved access by clients to health and social care that addresses social determinants of health. This access includes expanded programming in the program sites, increased understanding of partners’ services, and greater ease of referral to other supports and programs as needed by clients.
increased knowledge on the part of both the interagency partners and the wraparound service providers about the experiences that women face, such as the significance of poverty and trauma to women’s substance use. In turn this positively promotes non-judgemental and trauma-informed approaches with pregnant women and new mothers, as well as provision of more multifaceted and paced supports to address their needs.
improved child welfare outcomes. The program level relationships with child welfare workers, and in some cases integration of a social worker onsite, results in increased planning for positive mother-child outcomes during the pregnancy, improved mother-child connections after birth and reduced likelihood of the infant being removed from the woman’s care at birth.
strengthened cultural safety within the programming and (re)connection to culture by women. Partnerships with Indigenous organizations enhances learning by program providers about how to work in a culturally safe way and increased opportunities for referral to Indigenous programming for those women interested in connecting to their culture as a part of their wellness/recovery.
The partnerships continue to evolve through dialogue, collaboration and communication. What the study has identified is how, through these partnerships, wraparound program providers are contributing to the reduction of fragmentation between the health, child welfare and addictions fields – and in turn to important benefits for clients in terms of access to care and enduring connections with their children. In the work on prevention of FASD, it has repeatedly been emphasized how important the role of “Level 3 and 4” programming is, particularly in how such programs attend to the range of determinants of women’s health and alcohol use. Clearly it is in part through partnership work that FASD prevention is achieved.
Harm reduction and health promotion for women and their partners before conception are key to FASD prevention . Providing health information and supports during the preconception period provides an opportunity for men and women to actively plan for a healthy pregnancy and learn strategies such as healthy nutrition, supplementation, and reducing alcohol and other substance use . Such education and support can contribute greatly to optimizing health and preventing FASD .
Around the world, there are examples of unique approaches to preventing alcohol exposed pregnancies. Some interventions are geared towards women and men separately, and others are gender synchronized, creating complimentary programs for men, women, boys, and girls. Interventions may also include both members of a couple and include training for healthcare professionals.
Websites, such as Healthy Families BC and the Society of Obstetricians and Gynaecologists of Canada have pages offer information about alcohol use during pregnancy and clear and concise steps to consider before becoming pregnant. The recent ThinkFASD website sponsored by the CanFASD Research Network offers advice both for couples who are consciously planning a pregnancy, and those who are drinking and having unprotected sex. Other websites are interactive, such as Alberta Health Services’ Ready or Not, which allows a woman to click through different resources and prompts based on whether or not she feels ready to become pregnant. Don’t Know? Don’t Drink is a creative campaign in New Zealand, which posts fun, engaging graphics and videos to their social media platforms with messages about using contraception and supporting friends to not drink if there’s a chance they might be pregnant. The campaign caters to younger girls and encourages finding a “Pretestie Bestie”, a friend who supports you and your decision making before getting a pregnancy test, as a strategy of FASD prevention.
Interventions in the preconception period are not limited to women. Paternal drinking can impact men’s safety, sperm health, fetal/infant health, and women’s ability to reduce their alcohol use . Various programs have been geared towards men’s education about contraception options, reproductive health, and how to support partners in their efforts to reduce drinking before and during pregnancy. Project Alpha is an American collaboration aimed at educating boys age 12 to 15 about fatherhood, contraception, healthy relationships, and sexuality.
MenCare+ empowers men to be active and positive participants in their own health as well as the health of their partners and children. It has been implemented in Brazil, Indonesia, Rwanda, and South Africa and has been shown to reduce intimate partner violence in its participants, which is an important contributing factor to women’s substance use during pregnancy . In addition to programming for men, MenCare also offers workshops and training for healthcare professionals on engaging men in maternal and child health.
The internet has been a preferred source of information when it comes to preconception  and for couples who know they want to have children, web-based interventions are helpful tools. The UK’s Smarter Pregnancy program helps couples build a profile through an online health assessment and then offers evidence-based recommendations based on their profile. A similar approach is taken by HealthyMoms and HealthyDads complimentary websites, which were created after asking expectant moms and dads what information and supports they need to prepare for parenthood.
Culturally safe and non-judgemental interventions have been shown to be effective in reducing the risk of alcohol exposed pregnancies . In the US, CHOICES and Amor Y Salud are interventions geared towards Indigenous and Latinx communities. CHOICES educates non-pregnant at-risk women about contraceptive options and uses motivational interviewing to support women to reduce drinking. Amor Y Salud, available through the Oregon Health Authority Website, offers a radionovela that follows a young couple as they learn how to optimize their health and prepare for future children. In Canada, Best Start’s website has a page for Indigenous prenatal health with information and resources that integrates Indigenous knowledge with Western health information. They also provide resources, such as Planning for Change, to support healthcare providers in educating their patients about FASD and supporting them in making meaningful changes.
The variety of preconception education and support approaches illustrates opportunities for incorporating these initiatives across the various levels of reproductive health. Childbearing years span four decades for women and are longer for men, and interventions have and can continue to focus on those that are planning or not yet planning a pregnancy, as well as for those in the period before a pregnancy is confirmed. When such preconception and early pregnancy supports are well incorporated throughout the healthcare system, this key component of FASD prevention can be realized.
1. Network Action Team on FASD Prevention. (2010). Consensus on 10 fundamental components of FASD prevention from a women’s health determinants perspective. Canada Northwest FASD Research Network.
3. Webb, Shelby, and Diane Foley. “An Introduction to the Optimal Health Model for Family Planning Clinicians.” National Clinical Training Center for Family Planning, 17 Feb. 2020, http://www.ctcfp.org/optimal-health-podcast/.
4. McBride, N. and S. Johnson, Fathers’ role in alcohol-exposed pregnancies: Systematic review of human studies. American Journal of Preventive Medicine, 2016
5. Alhusen JL, Ray E, Sharps P, Bullock L. Intimate partner violence during pregnancy: maternal and neonatal outcomes. J Womens Health (Larchmt). 2015 Jan;24(1):100-6. doi: 10.1089/jwh.2014.4872. Epub 2014 Sep 29. PMID: 25265285; PMCID: PMC4361157.
6. Da Costa D, Zelkowitz P, Bailey K, Cruz R, Bernard JC, Dasgupta K, Lowensteyn I, Khalifé S. Results of a Needs Assessment to Guide the Development of a Website to Enhance Emotional Wellness and Healthy Behaviors During Pregnancy. J Perinat Educ. 2015;24(4):213-24. doi: 10.1891/1058-1243.24.4.213. PMID: 26834443; PMCID: PMC4718007.
7. Hanson, J., & Pourier, S. (2015). The Oglala Sioux Tribe CHOICES Program: Modifying an Existing Alcohol-Exposed Pregnancy Intervention for Use in an American Indian Community. International Journal of Environmental Research and Public Health, 13(1), 1. doi:10.3390/ijerph13010001
Building trusting and supportive relationships is foundational to women feeling safe and confident enough to take on the challenges of reducing substance use, addressing trauma, and parenting. As such, the relational approach addresses a core aspect of women’s health, stimulating a ripple effect that can enact change and growth in the lives of women at risk of having children with FASD.
Breaking the Cycle (BTC) has been delivering services using a relational lens since 1997 and have found that relationships facilitate healing and change for mothers, children, and the mother-child dyad through improving self-efficacy, instilling purpose, and increasing engagement in services2. The program emphasizes relationships of many types, including those among staff, between women and their children, staff and women, and the organization and service partners.
Breaking the Cycle Compendium Volume 2 – Healing Through Relationships compiles research conducted between 2008 and 2018, and the evidence shows that the relational approach offers opportunities to model relationships based on equality, empowerment, and respect, and that having strong relationships with service providers can have more impact on women’s health than the services themselves. Additionally, emphasizing interagency and intra-agency relationships and collaborations better positions a program to meet the needs of the women and children receiving services3. Through this approach, the BTC program has been successful in preventing FASD and has also positively increased confidence in parenting and mother-child bonds.
In focusing interventions and preventative efforts on building belonging and connection, existing and future programs can better address root causes of women’s substance use. It is from here that we can stimulate a ripple effect to make positive changes in the psychological, emotional, and physical health of mothers and their children.
Developing specialized, culturally safe, and holistic support for pregnant women is an important strategy in preventing FASD . In Labrador, Thea Penashue and June Fry of the Innu Roundtable Secretariat are bringing Innu midwifery and parenting back to Sheshatshiu and Mushuau Innu First Nations through two initiatives.
Centering Pregnancy was introduced in Sheshatshiu in 2018 to increase access to and use of primary prenatal care. The project was born from dialogues between the Innu Round Table Secretariat, Innu Health Directors, the Regional Health Board, physicians, and public health nurses. Centering Pregnancy is a group pregnancy outreach program where women can access prenatal group education, health assessments, and social support. The program promotes relationship-building by allowing participants to bring supports with them to the group sessions and encouraging discussion and bonding between women within the program. Expectant mothers have autonomy and control in their care in addition to support from a health care worker .
The Innu Midwifery Project aims to reintroduce traditional midwifery to Sheshatshiu and Natuashish, drawing on Innu Elders’ knowledge of Innu birthing practices. The project is being done in collaboration with Gisela Becker, the Chief Midwife for Newfoundland and Labrador, to support the training Innu midwives using a culturally-specific, hands-on, individually paced learning approach. Reintroducing midwifery to the Innu First Nations will result in Innu children being born on Innu lands, fostering a greater connection to the land and culture, continuation of cultural practices and culturally safe care, and empowering women in the context of their pregnancy.
These initiatives create a safer environment for Innu women to discuss their health. Based in and driven by the communities and culture, these programs are centered around women, their families, and the communities .
Thea Penashue, the Community Wellness Systems Navigator at the Innu Round Table Secretariat, delivered her second child in a tshuap, a traditional Innu tent, in September. She hopes that, through the Midwifery project and Centering Pregnancy program, more Innu women will be able to give birth in a tshuap, connecting to their land, culture, and sense of self as Innu people, in the company of their loved ones .
FASD Awareness Day started on September 9, 1999 to bring global awareness to Fetal Alcohol Spectrum Disorder (FASD).
This year, Canada FASD Research Network (CanFASD) is launching FASD Awareness Month for all of September. The goal is to bring awareness to what FASD is and challenge the stigma and misinformation surrounding the disability. In preparation, they have released a toolkit with information about FASD, speech-writing tips, and images that are strengths-based, non-judgemental, and person-centered as to reduce the stigma around FASD, alcohol, and pregnancy.
CanFASD’s campaign explores how FASD is many things; including a women’s health issue. Preventing FASD requires supporting women in addressing the issues that contribute to their substance use and experience of trauma. When women receive non-judgemental support that is tangible and offers practical help, women are able to reduce or abstain from substance use, improve their health, and be empowered mothers.
Positioning FASD as a woman’s health issue recognizes:
Communities’ roles in healthy pregnancies;
Service providers’ role in delivering services that women need (i.e. housing, employment, nutrition, anti-violence, substance use) in an accessible and non-judgemental way;
Governmental roles in creating evidence based alcohol policy, and addictions & child welfare policies that prioritize wrapping support around the mother-child unit; and,
Society’s role in learning more about alcohol use in pregnancy and FASD.
Key challenges in FASD prevention are the stigma directed to pregnant women and new mothers who use alcohol and other substances, and the fear of having children removed from mothers’ care if they report their use and/or seek help. A new resource, in toolkit format, Mothering and Opioids: Addressing Stigma – Acting Collaborativelyaddresses these long standing dilemmas for women and for service providers.
This toolkit provides tools, worksheets, and factsheets to aid substance use and child welfare workers in building capacity to offer mother-child centred, trauma informed, culturally safe, and harm reduction-oriented services and policies. The toolkit’s four sections each address a specific area or need in service delivery and provision:
Addressing Stigma in Practice
The first section examines how women who use opioids experience stigma and includes tools for assessing potentially stigmatizing practices. This section also includes a script for responding constructively to coworkers’ stigmatizing behaviour arising from the work of Lenora Marcellus and Betty Poag, as well as a factsheet entitled “10 Things Pregnant and Parenting Women Who Use Substances Would Like Practitioners to Know” created by women with lived experience accessing services at HerWay Home in Victoria BC.
Improving Programming and Services
The second section describes how stigma relates to the barriers that women face. It identifies promising practice and policy responses that address stigma and health, substance use, and child protection concerns. Tools are provided to facilitate integrating promising approaches into our responses, and to identify ways in which barriers can be overcome. It honours and advances the differing roles of substance use services and child welfare services in supporting women and children, as well as evidence informed shared approaches (See diagram from page 21)
Cross System Collaboration and Joint Action
The third section includes information and tools to facilitate cross-system collaboration. Collaboration between the child welfare and substance use fields provides an opportunity to improve child safety and support the recovery of parents. Cohesive working relationships between these sectors can foster advocacy, consultation, system navigation, safety planning, and streamlined referrals. In this, as in all sections there are resources that focus on Indigenous approaches to child welfare and substance use.
The final section discusses policy matters, and how defining and affirming policy values can clarify our work in both systems of care. This section emphasizes viewing mothers and children as a unit when developing policy and programming to facilitate the goal of keeping mothers and children together.
Researchers at the Centre of Excellence for Women’s Health worked with other researchers, service providers and women with lived experience to create a practical and forward looking resource designed to inspire self-reflection and action, to promote an immediate impact on current policy and practice. The tools are designed to help us continue to build on our capabilities to make mothers’ needs and voices central in our work, and to offer mother-child centred, trauma informed, culturally safe and harm reduction-oriented services and policies related to women’s use of alcohol, opioids and all other substances.
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
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.
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.
This study from the University of Cardiff in Wales has confirmed what most women’s health advocates know – that judging pregnant women for behaviours that may negatively affect fetal and child health, did not cause them to stop, but instead caused them avoid public and professional scrutiny, and to use in private. Women felt judged by healthcare professionals for their smoking and poverty, which made interactions with health care providers awkward. (See journal article on the study here.)
In the research 10 low-income, pregnant women in Wales were asked to “tell their stories” including how pregnancy affects their everyday life. Although smoking was discussed extensively by the women, interviewers did not raise the topic during the interviews. As part of their stories, women described their smoking behaviours, and reactions from the public, family, friends, and health care providers.
This study underscores what we know about substance use prevention in general – shame and stigma are not solutions to helping people change use, and specifically that the judgement of health professionals is tied to not accessing the support that is needed and deserved. In that way, the professionals become part of the problem instead of the solution. Evidence has established that using non-judgmental approaches are key to supporting behaviour change. These approaches emphasise harm reduction and employ collaborative and empathic conversations that respect individuals’ self determination and understand the underlying issues of substance use problems. Further to collaborative conversations, it is critical to understand substance use, and challenges to change substance use, as related to the burdens of violence and poverty faced by women – this forces us to move beyond a focus on individual behaviour and instead to action for social justice on these conditions of women’s lives.
The pNAT has written extensively about the importance of non-judgmental Level 2 discussions with women and their partners about alcohol, other substance use and the determinants of health that affect use. Included here are some resources that can help practitioners to engage in those discussions with women in a way that builds connection and relationship and supports movement toward positive change in alcohol and tobacco use, and related health and social concerns. As well, practitioners can connect to local pregnancy and addictions support programs to learn what community action to address stigma and promote social justice is underway.
Weinberger, A. H., Platt, J., Esan, H., Galea, S., Erlich, D., & Goodwin, R. D. (2017). Cigarette Smoking is Associated with Increased Risk of Substance Use Disorder Relapse: A Nationally Representative, Prospective Longitudinal Investigation. The Journal of clinical psychiatry, 78(2), e152-e160.