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4th in Series: First-ever FASD Prevention Plenary at the 7th International Conference on FASD: PART 3

“Research on Reaching and Engaging Women and Children using Approaches that are Theory Based, and have an Equity Lens” – Janet Christie, Addiction Recovery Coach, Canada; Anne Russell of the Russell Family Fetal Alcohol Disorders, Australia; Pippa Williams of UK and European Mothers Network-FASD; Margaret Leslie and Dr. Mary Motz of the Mothercraft/Breaking the Cycle, Canada

L to R: Janet Christie, Anne Russell, Pippa Williams, Margaret Leslie, Dr. Mary Motz with Dr. Nancy Poole, Prevention Plenary Co-Lead

One of the highlights of the first Plenary on Prevention at the 2017 International Conference on FASD, was the presentation on supporting women and families dealing with issues of alcohol and FASD.

Janet Christie, Anne Russell and Pippa Williams are three birth mothers who have created supports for women and families dealing with issues of alcohol or FASD. Their experiences have informed and are reflected in many reports and studies: that no woman intends to harm her child; that there are multiple and complex issues that affect women at risk for alcohol-exposed pregnancies; and, that fragmented and inflexible services make it difficult for women and families to get help.

Stigma is one of the biggest barriers affecting access to services. Addiction is still viewed by many as a moral failing rather than a public health issue. Meanwhile the alcohol industry normalizes and glamourizes drinking to women through targeted marketing campaigns. Women are often met with judgement and blame, and fear losing their children if they seek help for an addiction. As well, mothers whose children have FASD need support in dealing with their feelings of guilt and with parenting their children. Often women have complex and intersecting issues, including FASD, that affect their ability to accept support. While these three mothers/advocates are from different countries, they all identify these same issues, and call for programs with wrap-around services to support women and their families.

Margaret Leslie and Dr. Mary Motz then described such a program – Breaking the Cycle in Toronto and its mother-child study “Focus on Relationships”. Based upon well-researched attachment theory, the program focuses on the mother-child dyad during the pre- and post-partum period and on building trust, safety and relational capacity. Relationships extend to staff and service providers. Program efforts to develop collaborative relationships between child welfare, addiction recovery and mental health service agencies have successfully created an integrated and flexible program with the goal of supporting the whole family.

 

For more on these topics, see earlier posts:

The Mother-Child Study: Evaluating Treatments for Substance-Using Women, March 18, 2015
Supporting Pregnant and Parenting Women Who Use Substances: What Communities are Doing to Help, October 1, 2012
Herway Home ‘One-Stop Access’ Program in Victoria Set to Open, May 20, 2012
“New Choices” for Pregnant and Parenting Women with Addictions, January 9, 2012
Toronto Centre for Substance Use in Pregnancy (T-CUP), December 19, 2011
Clinical Webcast on Breaking the Cycle Program: September 20, 2011, August 2, 2011
Why Would She Drink? Winnipeg Free Press Articles Explore Drinking during Pregnancy, April 4, 2011

2nd in Series: First-ever FASD Prevention Plenary at the 7th International Conference on FASD: PART 1

“Evidence for multi-faceted, culturally relevant, community-led approaches” – Dr. James Fitzpatrick, Head, and Kaashifah Bruce, Program Manager of Telethon Kids Institute’s FASD Research; June Councillor, CEO of Wirraka Maya Aboriginal Health Services; Anne Russell, Russell Family Fetal Alcohol Disorders Association

Making FASD History newsletter

The “Make FASD History in the Pilbara” program in Western Australia is the result of community-led and culturally relevant efforts within Indigenous communities dealing with the effects of long-term colonization and FASD. It was developed in collaboration and partnership with communities in the Fitzroy Valley and provides strategies and programs to assess and diagnose FASD, as well as to provide health, educational, and management supports to mothers and children.

James Fitzpatrick described earlier successes that underpin this program – like the Lilliwan prevalence project, the PATCHES program to diagnose FASD, and the Marlu Strategy for prevention and intervention (See Video). Dr. Fitzpatrick was nominated in 2016 for the WA Australian of the Year award for his work on FASD.

June Councillor explained the role of the “’Warajanga Marnti Warrarnja” Project – translation Together We Walk This Country – in the strategy and its long-term approach. She featured a video of the project in her remarks. View the program launch Video here.

Kaashifah Bruce presented evaluation results of using this multi-pronged approach that show an increase in: 1) awareness of FASD and the harms caused by drinking in pregnancy; 2) intentions to NOT drink during future pregnancies; and, 3) intentions to help pregnant women not to drink. The encouraging results suggest that this community-led, multi-strategy approach can serve as a blueprint for success in other Aboriginal communities.

LtoR: June Councillor, Anne Russell, Kaashifah Bruce, and James Kirkpatrick

 

Finally, Anne Russell provided a lived-experience viewpoint with examples of how stigma and stereotyping impede prevention efforts. By describing her own as well as other women’s experiences, she underscored how important it is to avoid stereotypes about women and drinking, and to talk with women and communities about what they need and what is important to them.

For more on FASD prevention in Western Australia, see earlier posts:

Alcohol Think Again Campaign in Western Australia (June 19, 2012)

Films from the Lililwan Project: Tristan and Marulu (May 9, 2012)

FASD Campaign from Kimberley and Pilbara Regions of Western Australia (October 22, 2012)

FASD Prevention in Australia’s Ord Valley (October 13, 2011)

Targeting Health Professionals in Western Australia (February 9, 2011)

Getting Fathers Involved (January 4, 2011)

More Activism from Australia (October 19, 2011)

Yajilarra: the story of the women of Fitzroy Crossing (October 15, 2010)

FASD Initiatives in Western Australia (September 15, 2010)

Prevention Plenary Opening: Moira Plant and Nancy Poole introduce group from Australia

In 7 years, the FASD International Conference has grown to become a truly international event with presenters from six continents and from international health organizations such as the World Health Organization. Current research on clinical topics we’ve come to expect, like prevalence, diagnosis, and neurodevelopment outcomes, were featured this year along with newer topics like biomarkers and epigenetics (See some of the video recorded conference presentations here).

It was the emphasis on prevention, and stigma that took center stage for many attendees. For the first time, there was a specialized prevention plenary – “FASD Prevention Research – State of the Evidence, and Plans for a Global Network” – developed by Nancy Poole (CanFASD; Centre of Excellence for Women’s Health) and Moira Plant (Alcohol & Health Research Unit, University of West England).  Using a model of prevention research used worldwide that Nancy first presented in a poster in 2009, researchers, advocates and birth mothers from around the world talked about where we are and where we need to go.

Watch for upcoming blogs in the next weeks for details on specific prevention presentations.

Objectives for the Prevention Plenary

The Prevention Plenary was divided into 4 areas of presentation and discussion that we will cover in a few posts in the next weeks:

  1. Community-wide FASD prevention with Indigenous communities
  2. International research on discussing alcohol with all women and their partners, and empowering professionals to have these conversations
  3. Research on reaching and engaging women and children at highest risk using approaches that are theory based, and have an equity lens
  4. Plans for international FASD prevention research infrastructure

 

For posts on past International FASD conferences, see:

The 5th International Conference on Fetal Alcohol Spectrum Disorder: Special Session on FASD Prevention, January 14, 2013

Webcasts on 4th Annual International Conference

Federal, provincial, and territorial ministers met in Halifax, Nova Scotia, on October 14-5 to discuss issues of justice and public safety in Canada including the impact of FASD. Co-chairs of the meeting were Minister of Justice and Attorney General, Jody Wilson-Raybold, Minister of Public Safety and Emergency Preparedness, Ralph Goodale, and the Minister of Justice and Atto2016-09-life-of-pix-free-stock-leaves-red-sky-leeroyrney General of Nova Scotia, Diana Whalen. Five national indigenous groups participated in the meeting: the Native Women’s Association of Canada, the Assembly of First Nations, the Métis National Council, Inuit Tapiriit Kanatami, and the Congress of Aboriginal Peoples.

Vice-Chief Kim Beaudin from the Congress of Aboriginal Peoples outlined the groups’ priorities to the ministers. Stating that “the most significant issue is violence against women and girls” Beaudin further stressed related issues of FASD, Indigenous girls’ health and safety, violence against Indigenous women, and family justice reforms for Indigenous women.

During the meeting, Ministers discussed the Truth and Reconciliation Commission of Canada: Calls to Action. It underscores the need to address FASD in action numbers 33 and 34, in particular. Ministers agreed to collaborate on addressing solutions for the economic and social impacts of alcohol abuse and to release their final report on FASD and Access to Justice.

FASD prevention efforts in Canada call for multiple approaches that are holistic and move beyond just advising women not to drink during pregnancy (See: Four-part Model of Prevention). The impact of violence and trauma in all its forms on the mental and physical health and safety of women and their families and communities informs and shapes these efforts.

For more on related topics, see earlier blog posts:

thunder-bay-report-coverAs part of the work of the Family Health Program, the Thunder Bay District Health Unit has published results from a research project on best practices to preventing alcohol-exposed pregnancy. Alongside reviewing literature, they looked at practices both in their health unit and among local community programs and services, and at provincial public health standards.

Seven over-arching themes were identified for a multi-pronged approach to preventing FASD:

1.  Population Health Surveillance
2. Public Awareness
3. Public Programs
4. Education for Health Care and Social Service Providers
5. Screening and Intervention by Health Care and Social Services Providers
6. Partnerships
7. Policy/Government Directives (1)

The report targets gaps to be addressed within each of these themes. As an example, within “Public Programs” there is a call to expand or develop programming that is culturally based and that includes women’s partners, and within “Education” to replace generalized training and education with approaches that target specific provider needs.

The authors caution readers not to “dilute the alcohol and pregnancy focus” when incorporating recommendations into existing service structures, and stress that additional research and evidence of programming, policy, and partnerships is needed.

Download the full report here to read more about their research methods, findings and recommendations, and to explore linkages with the Ontario Public Health Standards for reproductive health.


REFERENCES
  1. Thunder Bay District Health Unit, Family Health Program. (2016). Effective interventions and strategies to prevent alcohol-exposed pregnancies. Thunder Bay, ON.

 

FASD Conference 2

Marsha Wilson, Nancy Poole and Dorothy Badry at the 7th National Biennial Conference on Adolescents and Adults with Fetal Alcohol Spectrum Disorder (FASD). Session E3: Developments in Prevention of FASD – The Work of the Can FASD Prevention Network Action Team

At the 7th National Biennial Conference on Adolescents and Adults with FASD in Vancouver on April 9, 2016, Nancy Poole and Dorothy Badry described the work of CanFASD’s Prevention Network Action Team (pNAT).  They provided examples of the pNAT’s work on:

  1. Network building – Sharing expertise and skills through a network of researchers, policy analysts, clinicians, community-based service providers and advocates dedicated to FASD prevention
  2. Research – Building multidisciplinary research teams, developing research proposals, and conducting research
  3. Collaborative knowledge exchange – Developing and implementing strategies for moving “research into action” such as through workshops, curricula development for health and social service professionals, and policy analysis
  4. Influencing policy and service provision  Guiding service and policy improvements with governments and communities

Given the conference focus on adolescents and adults with FASD, the 2011 research led by pNAT member Deborah Rutman on prevention with girls and women with FASD and substance use problems was highlighted.   Treatment and support with girls and women who live with FASD is one of the least researched areas of FASD prevention.

A list of FASD prevention resource materials developed by pNAT members was provided. Reports and infographics that summarize research, and thereby support research-to-practice and -policy are included below.

LINKS

7th National Biennial Conference on Adolescents and Adults with FASD

Research on prevention with girls and women with FASD

CanFASD  – description of the pNAT

FASD Prevention Resources Spring 2016

FASD Resources

screenshot

Developed by the Saskatchewan Prevention Institute, the FASD Training Package for Post-Secondary Instructors is a resource  for post-secondary instructors and professors.

The focus of the resource is on understanding and preventing FASD. It can be used to provide information and education about Fetal Alcohol Spectrum Disorder (FASD) to students enrolled in professional programs leading to a career working with women of child bearing age.

Examples of programs include that this resource might be helpful for include: health care, education, justice, addictions, psychology, social work, and other community services’ programs (e.g., Early Childhood Education, Disability Support Worker, and Correctional Studies.)

The teaching package contains 11 modules with references. These modules provide evidence-based information on topics such as “What is FASD”, “Alcohol, Women, and Pregnancy”, “Prevention of FASD”, and “Primary and Secondary Disabilities”.

A downloadable PowerPoint with teaching notes is ready for use in class. Both the PowerPoint and written modules contain case studies, activities, and discussion questions that may be used with any group.

Download the package from the Saskatchewan Prevention Institute’s website.

toc

ACEs_Original

Adverse childhood experiences (ACEs) is a term that describes potentially traumatic events that can have lasting negative effects on health and well-being. Research has shown a clear connection between ACEs on alcohol use and misuse in adults.

An emerging area of research also suggests that a history of childhood stressors, such as physical, sexual, and emotional abuse, may influence alcohol use among pregnant women.

In a recent study, researchers used data from the 2010 Nevada Behavioral Risk Factor Surveillance System to learn more about this relationship. They found a dose–response relationship between ACEs and alcohol use during pregnancy that remained even after controlling for pre-pregnancy drinking and other known factors that influence drinking during pregnancy.

This study contributes to a growing body of research demonstrating that factors affecting alcohol use during pregnancy begin long before pregnancy.

It also suggests the importance of initiatives and movements such as ‘trauma-informed’ practice and their application to FASD prevention. Learn more about trauma-informed practice, alcohol, and pregnancy use on the Coalescing on Women and Substance use website.

For more on this topic, see earlier blog posts:

5_preganancy

References

Astley, S.J., et al. (2000). Fetal Alcohol Syndrome (FAS) primary prevention through FAS Diagnosis: II. A comprehensive profile of 80 birth mothers of children with FAS. Alcohol and Alcoholism,  35(5): p. 509-519. [Free full text]

Choi, K.W., Abler, L.A., Watt, M.H., Eaton, L.A., Kalichman, S.C., Skinner, D., Pieterse, D., and Sikkema, K.J. (2014) Drinking before and after pregnancy recognition among South African women: the moderating role of traumatic experiences. BMC Pregnancy and Childbirth, 14: 97. [Free full text]

Chung, E. K., Nurmohamed, L., Mathew, L., Elo, I. T., Coyne, J. C., & Culhane, J. F. (2010). Risky health behaviors among mothers-to-be: The impact of adverse childhood experiences. Academic Pediatrics, 10(4): 245–251. [Free full text]

Frankenberger, D.J., Clements-Nolle, K., Yang, W. (2015). The Association between Adverse Childhood Experiences and Alcohol Use during Pregnancy in a Representative Sample of Adult Women. Women’s Health Issues (epub ahead of print). [Abstract]

Nelson, D. B., Uscher-Pines, L., Staples, S. R., & Ann Grisso, J. (2010). Childhood violence and behavioral effects among urban pregnant women. Journal of Women’s Health, 19(6): 1177–1183. [Abstract]

Skagerstrom, J., Chang, G., & Nilsen, P. (2011). Predictors of drinking during pregnancy: A systematic review. Journal of Women’s Health, 20(6):901–913. [Free full text]

2015 Conference

The BC Association of Pregnancy Outreach Programs (BCAPOP) is made up of Pregnancy Outreach Programs from across British Columbia.

Pregnancy Outreach Programs provide free prenatal and early parenting support to women who experience health or lifestyle challenges during pregnancy, birth and the transition to parenting. The BCAPOP supports POPs in their work to enhance maternal and infant health for the long-term benefit of communities. Many of the programs work with women who are at high risk of having a child with FASD.

The 19th Annual BCAPOP Conference and Annual General Meeting will be held October 27-29, 2015 in Richmond, BC. The theme of this year’s conference is “Embracing Diversity and Celebrating Inclusion.” Keynote speakers include Diane Malbin who will be talking about “FASD — Normalizing Discomfort and Creating Comfort” and Jessica Ball who will discuss “Ensuring Cultural Safety in Services for Indigenous Children and Families.

Learn more about the conference here.

Edmonton inner-city program - Aboriginal - CBC'

The Healthy, Empowered and Resilient (H.E.R.) Pregnancy Program in Edmonton, Alberta uses professional staff and peer support workers to reach at-risk pregnant and parenting women in inner city Edmonton. The program, developed by Streetworks, supports street-involved women to access healthcare services before and throughout their pregnancy and address issues such as addiction, poverty and family violence.

CBC News featured the H.E.R. Pregnancy Program last week in the article “Pregnant aboriginal women find ‘world of difference’ in Edmonton inner-city program” (July 27, 2015). Nikki Wiart interviewed staff and clients of the program and learned about the importance of outreach, peer support, and the impact of early engagement with services on pregnancy and parenting outcomes.

90% of the program’s clients are Aboriginal while 50% of the staff is Aboriginal. Morgan Chalifoux, a pregnancy support worker, with the program describes how her personal experiences as a teen mother and living on the streets can make a difference: “”Honestly, if I wasn’t aboriginal, if I didn’t have the experience, if I didn’t use when I was on the street, if I didn’t understand what it was like to have my son threatened to be taken away from me … I wouldn’t be able to have the success that I have now with the clients.”

The program uses a harm reduction approach to addressing alcohol and other substance use during pregnancy. An evaluation of the program found that:

  • 76% of 139 pregnant women who connected with the program reported substance use, typically alcohol (32%), marijuana, and other drugs
  • While connected with the program, women reported elimination of use (40%), safer use (37%), and reduction of substance use (26%) at least once during their pregnancy with the program

The Alberta government has committed to funding the program for another three years as well as developing similar programs in Red Deer and Calgary.

For more on the H.E.R. Pregnancy Program, see earlier posts:

Overview: Four Levels of FASD Prevention

Information Sheet: What Men Can Do To Prevent FASD

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