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.
Members of the Prevention Network Action Team recently attended a webinar sponsored by the Children and Family Futures Program (CCFutures) in the US. During the webinar, a CFFutures representative shared how Plans of Safe Care (POSCs) were being developed to support women who are using substances during pregnancy and promote mother/child togetherness at the time of delivery.
These POSCs are being instigated by court teams, who convene multi-agency collaborations that include child welfare, substance use treatment and OAT providers, medical/health care providers and children’s services, including home visitation and peer recovery supports. The peer supports play a key role in engaging families in voluntary services prenatally or prior to child welfare involvement, helping them navigate social services systems, as well as assisting with creating and monitoring the POSC, and providing important insights into barriers experienced by the families.
This POSC approach has the benefits of forging strong and deliberate partnerships across providers and is positively informing child welfare responses to women and infants where there has been prenatal substance exposure. This work to provide organized, trauma-informed and effective care prenatally is preventing removal of children at birth and family separation overall. At the court level, it is integrating a prevention mindset by asking what it would take to maintain the child in the home and ensure that reasonable and active efforts are made to support the woman’s and family’s health. At the community level, it involves the funding of community coordinators to oversee collaboration and implementation, as well as community education and training. It means that there is coordination from pre-to postnatal care, and that continuity of services is provided. And it is reducing NICU stays and the need for pharmacological interventions.
This is an excellent example of system level change to prevent FASD, as opposed to individualizing and medicalizing the response. The leaders cite similar barriers to what has been identified in many locations and in research about system-level barriers including limited staff and system capacity, concerns about confidentiality, stigma, as well as lack of knowledge about POSCs and their benefits – yet they are addressing these. One of the sites was quoted to say that most of the efforts did not require funding, with the implication that the accomplishments can be sustained in the local systems of care. Instead of requiring significant additional funding for the POSC work they “required commitment and investment by all involved parties to systems change and improved practices – collaboratively and individually – as providers and entities working with the target population.”
The description of this fine work has echoes in the conversations we at the Prevention Network Action Team have had over the years, and when developing the Mothering and Opioids: Addressing Stigma-Acting Collaboratively resource (see the policy values diagram from that resource below). Many of us have, and continue to, advocate for and deliver components of this coordinated system level response. The webinar covered the solid evaluation evidence for this type of response in detail, but the big story is that system level can be done that effectively and safely supports women, children and families. Where there’s a will, there’s a way.
Preventing Fetal Alcohol Spectrum Disorder (FASD) requires a range of efforts from general awareness to targeted prevention and treatment services. In the Canadian Four-Part FASD Prevention Model, Level 3 and 4 programs provide low barrier holistic services for pregnant or parenting women who face substance use and a range of other health and social burdens and challenges.
Over a four-year period, the Co-Creating Evidence (CCE) evaluation study has involved eight different community-based Level 3 & 4 programs that support women through the provision of holistic, wraparound services, and in doing so, see FASD prevention as part of their mandate. These programs are guided by theoretical approaches such as being trauma-informed, relationship-based, women-centred, culturally grounded and harm reducing. The evaluation team has been led by the Nota Bene Consulting Group and has involved researchers from the Centre of Excellence for Women’s Health and representatives of the eight programs.
This CCE evaluative study (2017-2020) has had three main research questions:
What are the common elements of the diverse Level 3 programs across Canada?
What program components are helpful from women’s perspectives?
What are best measures to evidence outcomes and what outcomes are being achieved?
The answers to these questions are now available via:
In all these documents, service providers, researchers, policy makers and women with lived/living experience will see promising approaches and outcomes that these programs provide and the women who access these programs are realizing, together with their community partners. This study makes a significant contribution to our understanding of this level of FASD prevention. It hopefully will be an inspiration to all those committed to this important work.
Funding for this project has been received from the Public Health Agency of Canada, Fetal Alcohol Spectrum Disorder (FASD) National Strategic Project Fund. The views expressed herein do not necessarily represent the views of the Public Health Agency of Canada.
The Prevention Network Action Team (pNAT) recently had an inquiry from an ally about what research is available that informs us about the experience of mothers whose children have been diagnosed with a FASD (sometimes called “birth” mothers). While three researchers associated with the pNAT have undertaken research with mothers for their Master’s or PhD theses (Dr. Amy Salmon, Dr. Dorothy Badry and Dr. Kelly Coons-Harding) we realize that this is a significant gap in the available published research!
We have relied (and will continue to rely!) on the wisdom of mothers who have presented with us at FASD conferences, people such as Pip Williams (UK), Elizabeth Russell (AU), Lisa Lawley and Janet Christie (CA) and Kathy Mitchell (US). Their courageous and thoughtful work as addiction coaches, spokespersons and organizers of networks has contributed so much to our understanding of the issues they have faced, and to the benefits of peer support for mothers who deserve such wise and kind mentors.
In addition to the wisdom of mothers, to answer the request for information, we gathered – see the list below – the academic literature specifically about biological mothers of children with FASD, and welcome readers to send us further links. Here are a few key ideas that emerge from these articles.
Stigmatizing attitudes prevail – Mothers who have been interviewed by researchers describe societal and service provider ignorance about FASD, and harsh judgements directed to women who drink in pregnancy. This perpetuates the reluctance of women to access support. When mothers do access care for themselves and their children, they report additional unintended stigma from physicians and diagnostic teams.
Addiction and other overwhelming influences – Most often in the studies, mothers describe having a family history of alcohol problems and/or mental illness, addiction problems themselves and histories of intimate partner violence. And they note that services which are welcoming, non-judgemental and integrate support on trauma/violence, substance use/addiction and women’s/maternal health are not usually readily available.
Transformation – Some women described that having a child with FASD gave them a reason to stay sober and in effect saved them from a life of addiction and possible death. In essence, it caused a major shift to a recovery trajectory for them. A part of the transformation is empowerment related to knowing they are helping to break the generational cycle of trauma and addiction in their family. The courage and ongoing effort involved, and the external challenges encountered related to recovery, stigma and parenting a child with FASD are formidable.
Adapting to motherhood and becoming advocates – The journey of becoming a mother, addressing an addiction problem, and raising a child with a disability is a very special path. Often mothers noted that they shifted gears to be the best advocate they can be for their child, and to become advocates on the issue to help other women by increasing awareness of FASD, and of how mothers can and do make adaptations and become advocates.
Studies about the perspectives of mothers who have given birth to a child with FASD
Badry, D.E. (2008), “Becoming a birth mother of a child with fetal alcohol syndrome”. Dissertation
Stewart, M., Lawley, L., Tambout, R., & Johnson, A. (2018). Listening in a Settler State: (Birth) Mothers as Paraprofessionals in a Response to FASD. In D. Badry, H. Montgomery, D. Kikulwe, M. Bennett, & D. Fuchs (Eds.), Imagining Child Welfare in the Spirit of Reconciliation: Voices from the Prairies (pp. 117-138): University of Regina Press.
Salmon, J. (2008). FASD: New Zealand Birth Mothers’ Experiences. Canadian Journal of Clinical Pharmacology, 15(2), e191-213.
Thomas, R., & Mukherjee, R. (2019). Exploring the experiences of birth mothers whose children have been diagnosed with fetal alcohol spectrum disorders: a qualitative study. Advances in Dual Diagnosis, 12(1/2), 27-35. doi:10.1108/ADD-10-2018-0014
Studies about mothers of children with FASD (birth, foster, adoptive), societal attitudes and research engagement
Salmon, A. (2007). Walking the talk: how participatory interview methods can democratize research. Qual Health Res, 17(7), 982-993. doi:10.1177/1049732307305250
Coons, K. D., Watson, S. L., Schinke, R. J., & Yantzi, N. M. (2016). Adaptation in families raising children with fetal alcohol spectrum disorder. Part I: What has helped. Journal of Intellectual & Developmental Disability, 41(2), 150-165. doi:10.3109/13668250.2016.1156659
Corrigan, P. W., Lara, J. L., Shah, B. B., Mitchell, K. T., Simmes, D., & Jones, K. L. (2017). The Public Stigma of Birth Mothers of Children with Fetal Alcohol Spectrum Disorders. Alcohol Clin Exp Res, 41(6), 1166-1173. doi:10.1111/acer.13381
Shahram, S. Z., Bottorff, J. L., Kurtz, D. L., Oelke, N. D., Thomas, V., & Spittal, P. M. (2017). Understanding the Life Histories of Pregnant-Involved Young Aboriginal Women with Substance Use Experiences in Three Canadian Cities. Qual Health Res, 27(2), 249-259. doi:10.1177/1049732316657812
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.