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Many women who have FASD are able to benefit from tailored support on substance use problems. Audrey McFarlane, Executive Director of Lakeland Centre for FASD in Cold Lake AB recently shared strategies for working on FASD prevention with women who have FASD themselves. One of the LCFASD programs, the 2nd Floor Women’s Recovery Centre, provides residential treatment exclusively to women. She explained how programs can better support women who have FASD.

Challenges

Because of the possible neuro-behavioural and physical health issues associated with FASD, working with women living with FASD may pose particular challenges for the service provider due to:

  • Limited understanding of how their body works and how or why to use birth control;
  • Limited understanding of how to get housing, money and to keep themselves safe;
  • Physical health issues, such as diabetes, STDs, vision, hearing and dental;
  • Limited ability to envision the future;
  • Inability to link actions to consequences, which makes them more likely to be connected to the justice system and to have many children not in their care with multiple partners.

Strategies

McFarlane says that these and other challenges mean it often takes longer to see the benefits of supports. Yet, there are a number of strategies that have proven successful.

  • Take a family alcohol history and ask each woman, specifically, if she has a diagnosis of FASD. Woman will tell you if they do, but are often not even asked.
  • Make suggestions in key areas where they can agree or disagree rather than using client-generated approaches.
  • Prioritize building a relationship so that the woman will come back for support as needed. Reframe returning to treatment as a positive, not a negative.
  • Expect to spend more time on basic life skills and necessities. She may not have connection to family or social services. This means treatment needs to be longer.
  • Approaches that work best include solution-focused counselling, physical activities, positive touch, relaxation, and connections that develop a sense of belonging, like volunteering and cultural practices.

Resources

Here are a number of resources on trauma-informed and FASD-informed approaches for working with women living with FASD.

FASD Informed

2 Reports on Substance Using Women with FASD and FASD Prevention: Voices of Women and Perspectives of Providers, prepared by Deborah Rudman

Evaluation of FASD Prevention and FASD Support Programs website

FASD Informed Approach by Mary Mueller, RN, Waterloo Region Public Health and Emergency Services

FASD Informed Practice for Community Based Programs, College of New Caledonia

Working with Women Who May Have FASD Themselves – Webinar View SlidesRecording

Trauma Informed

Pregnancy, Alcohol, and Trauma-informed Practice, The Prevention Conversation

Trauma-informed Approaches to FASD Prevention – Webinar View SlidesRecording

Trauma-Informed Practice Resource List, Centre of Excellence for Women’s Health

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For more on this topic, see earlier posts:

WEBINAR JUNE 23 – WORKING WITH PREGNANT AND PARENTING WOMEN: LEARNINGS FROM HERWAY HOME, June 16, 2016

NEW CURRICULUM FOR FASD INFORMED PRACTICE, August 1, 2016

THE MOTHER-CHILD STUDY: EVALUATING TREATMENTS FOR SUBSTANCE-USING WOMEN, March 18, 2015

FACT SHEET ON SUPPORTING WOMEN WITH FASD IN RESIDENTIAL SUBSTANCE ABUSE TREATMENT, April 22, 2013

TRAUMA MATTERS: GUIDELINES FOR TRAUMA‐INFORMED PRACTICES IN WOMEN’S SUBSTANCE USE SERVICES, April 17, 2013

 

Individuals with FASD and women who use alcohol and drugs during pregnancy have long been targets of both overt and unconscious stigma.  We know that stigma can undermine FASD prevention and intervention efforts by assigning underserved blame, simplifying a complicated issue, and focusing on deficits rather than building on strengths. Women who are shamed are often afraid to seek services, which undermines prevention efforts. Recognizing this problem, the 14 Manitoba FASD Coalitions across the province created the “Looking After Each Other: A Dignity Promotion Project” in 2014 to “promote the dignity of those with FASD and their families.”

The Looking After Each Other project completed two new resources recently to add to their previous activities. One is the FASD Language Guide in both English and French that explains how and why the way we talk about FASD can be stigmatizing. The guide reviews certain commonly used words and phrases and offers alternatives. Some phrases were once the preferred term, but have been rethought over time. For instance, framing the issue of women using alcohol and drugs as “choosing to use” blames women by failing to recognize complicating factors such as mental health, addiction, or abuse issues that make it difficult to stop using during pregnancy.

The other new resource is a mini documentary that was made in collaboration with The Mothering Project in Winnipeg. Entitled “Meeting Women Where They Are At: Community Making a Difference,” it features several women who participate in the programs and services of the Mothering Project. By sharing their stories, viewers come to understand what these women have overcome, how they have built healthy relationships with themselves, their communities, and their children, which helps to dispel conscious and unconscious biases. As Tammy Rowan, Program Manager, explain the Mothering Project takes a relational approach to supporting women in their lives and as parents. Watch the mini documentary here.

For more information, see earlier posts:

COERCIVE MESSAGING FOR PREGNANT WOMEN? June 2, 2017

REACHING AND ENGAGING WOMEN: WHAT WORKS AND WHAT’S NEEDED May 15, 2017

CONVERSATIONS ON ALCOHOL: WOMEN, THEIR PARTNERS, AND PROFESSIONALS April 23, 2017

FASD PREVENTION WITH INDIGENOUS COMMUNITIES IN AUSTRALIA April 3, 2017

FIRST-EVER FASD PREVENTION PLENARY AT THE 7TH INTERNATIONAL CONFERENCE ON FASD March 22, 2017

NEW FACILITATOR’S FASD TRAINING GUIDE FOR FIRST NATIONS WOMEN January 3, 2017

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

“SUPPORTING PREGNANT WOMEN WHO USE ALCOHOL OR OTHER DRUGS: A GUIDE FOR PRIMARY HEALTH CARE PROFESSIONALS” May 15, 2016

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

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)

Best Start Resource Centre in Ontario has published a new guide to help facilitators deliver FASD workshops for First Nations women (Download guide). Using culture as its foundation, the guide focuses on promoting health. It also integrates FASD-informed and trauma-informed approaches. It is set up so that facilitators do not have to be an expert on the subject of FASD. The guide provides detailed background information, instructions and resources so that facilitators can fully prepare themselves for delivering the workshops.

planning-for-change-picture

Topics covered in the training guide include:

  • Preparing for the Workshop – covers information like bringing the workshop to communities where there is a concern about the stigma attached to FASD, planning for participant learning differences, as well as handling logistical details.
  • Facilitating the Workshop – includes welcoming activities, giving background about healthy pregnancy, identifying and building on personal strengths, making a plan for health, and drawing on community for support and self care.
  • Resources, Services and Appendices – provided are weblinks to further information and videos; services for pregnancy, parenting, substance use and FASD; participant handouts, and consent forms.

Best Start Resource Centre is well known for its resources for service providers who work with diverse women and families on preconception health, prenatal health and child development.

For more on related topics, see earlier posts:

FASD is a public safety and justice priority for Aboriginal groups, October 23, 2016

Experiences of Northern British Columbian Aboriginal Mothers Raising Adolescents With FASD, January 20, 2014

Pimotisiwin: A Good Path for Pregnant and Parenting Aboriginal Teens, August 26, 2013

“You are not alone. Support is available.” Alcohol and pregnancy campaign designed by and for Aboriginal women in Manitoba, April 10, 2013

Handbook for Aboriginal Alcohol and Drug Work from Australia, January 9, 2013

The Sacred Journey – new resource for service providers who work with First Nations families, August 1, 2012

Aboriginal Comic Book for Pregnant Women and New Moms, May 1, 2012

Pregnancy and Alcohol Brochure for Aboriginal Families, January 30, 2012

Aboriginal midwifery and Poverty & Pregnancy in Aboriginal Communities, August 17, 2011

FASD ANNOTATED BIBLIOGRAPHY 2015, PART 3

FASD Prevention: An Annotated Bibliography of Articles Published in 2015 organizes articles based on the four levels of prevention. 2015 BibliographyWe’ve been featuring some of those articles and in this post we narrow in on Level 3 FASD prevention efforts – specialized holistic support available to pregnant women with alcohol and other health or social problems. Following are a few of the bibliography articles with that research focus.

Two studies from South Africa underscore the interconnections of alcohol use in pregnancy and the benefits of integrated and holistic services for pregnant women. A large study done in Cape Town, randomly assigned all pregnant women in 24 low-income neighbourhoods either to standard care or to a home-visiting intervention. In total over 1,000 mothers were assessed during pregnancy and at 18 and 36 months post-partum with positive findings for those receiving the home-visiting intervention. 4-levels-fasd-preventionThe authors find that a significant relationship exists over time between alcohol use, partner violence and depression, and they recommend integrated interventions [1]. Similarly, a case management intervention for 67 pregnant women using Motivational Interviewing, Community Reinforcement Approach and life management reduced heavy drinking in pregnancy [2].

Marcellus, MacKinnon et al. through their work with the HerWay program in BC, Canada, “reenvision” success when working with pregnant women with problematic substance use. They identify a holistic range of indicators for success, not only for program participants, but for service providers, community partners and system leaders [3]. This kind of harm-reduction model is getting more attention in the USA. Kramlich & Kronk reviewed six such programs over the last 10 years and conclude that “comprehensive, integrated multidisciplinary services for pregnant women with substance use disorder aimed at harm reduction are showing positive results.”[4]

Torchalla, Linden et al. conducted interviews in the Downtown Eastside of Vancouver, Canada, with 27 pregnant or post-partum women seeking harm-reduction services. They found that multiple forms of trauma were pervasive, ongoing, and reinforced in most areas of the women’s lives. Yet, most of the women did not want trauma-specific counseling when offered it. This underscores, according to the authors, the need for multi-focused, trauma-informed, harm-reduction interventions that broaden their focus to include gender-based violence and human rights [5].

Whitaker provides an overview of the World Health Organization (WHO) guidelines on substance use during pregnancy [6]. The author identifies some of the limitations of the guidelines including effectiveness of varying treatment approaches, knowledge gaps, and ethical issues, yet calls the guidance essential reading for practitioners working with women, children and families where substance use is involved.

Findings show that relational, holistic/integrated, and trauma-informed approaches are effective ways to support substance using women and their families. Yet, training, education and support of practitioners who work with them are vital. Additionally, more research in a number of specific areas is needed.

Find out more about these journal articles as well as articles for all four levels of FASD prevention in The Annotated Bibliography.

REFERENCES

  1. Rotheram-Borus, M.J., et al., Alcohol use, partner violence, and depression: A cluster randomized controlled trial among urban South African mothers over 3 years. American Journal of Preventive Medicine, 2015. 49(5): p. 715-725.
  2. de Vries, M.M., et al., Indicated Prevention of Fetal Alcohol Spectrum Disorders in South Africa: Effectiveness of Case Management. International Journal Of Environmental Research And Public Health, 2015. 13(1).
  3. Marcellus, L., et al., Reenvisioning success for programs supporting pregnant women with problematic substance use. Qualitative Health Research, 2015. 25(4): p. 500-512.
  4. Kramlich, D. and R. Kronk, Relational care for perinatal substance use: A systematic review. MCN, the American Journal of Maternal Child Nursing, 2015. 40(5): p. 320-326.
  5. Torchalla, I., et al., “Like a lots happened with my whole childhood”: violence, trauma, and addiction in pregnant and postpartum women from Vancouver’s Downtown Eastside. Harm Reduction Journal, 2015. 12(1): p. 1-10.
  6. Whittaker, A., Guidelines for the Identification and Management of Substance Use and Substance Use Disorders in Pregnancy. Drug & Alcohol Review, 2015. 34(3): p. 340-341.

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.

New Zealand has published an action plan on how best to address FASD. Described as a “whole of government action plan” by Associate Minister of Health, Peter Dunne, Taking Action on Fetal Alcohol Spectrum Disorder: 2016-1019 builds on the best practices being done across communities and service sectors including government policy and partnerships, as well as front line prevention and intervention. According to Fetal Alcohol Network NZ, the government is earmarking an initial 12 million for these efforts, which will increase support and services to women with alcohol and substance use issues.

New Zealand began the process of building the action plan with a discussion document of principles, priorities and action areas. They spent over a year seeking submissions and comments on the plan from professionals, communities, families and whānau (Maori extended family.)  Notable changes to the principles based on those submissions included issues of ethnic and services inequities, as well as stigmatization of women, families and individuals with FASD. The resulting principles defined the core priorities of the plan: prevention, early identification, support and evidence. These priorities framed its action building blocks and designated indications of success of plan outcomes. You can view an analysis of the Ministry of Health action plan submissions here.

By underscoring a collaborative and practical approach, the goal is to make sure that “FASD is prevented and people with FASD and their family/whānau live the best possible lives.”(1) Read more about New Zealand’s efforts:
http://www.health.govt.nz/publication/taking-action-fetal-alcohol-spectrum-disorder-2016-2019-action-plan

To read more about New Zealand’s prevention efforts see these previous posts:

First FEBFAST and Debates about Alcohol Labeling in New Zealand, February 1, 2011


References

  1. FASD Working Group. 2016. Taking Action on Fetal Alcohol Spectrum Disorder: 2016–2019: An action plan. Wellington, NZ: Ministry of Health.

 

 

 

The College of New Caledonia (CNC) has developed a FASD-informed training curriculum to support their FASD informed guide and in response to the expressed needs of three national programs supported by the Public Health Agency of Canada (PHAC) that focus on healthy birth outcomes and healthy outcomes for children.

FASD Trauma Informed guide“Facilitating a Collaborative, Strength-based Approach to FASD Informed Practice:  Western Region BC” was developed following consultations with workers in The Community Action Program for Children (CAPC), the Canada Prenatal Nutrition Program (CPNP), and Aboriginal Head Start (AHS in BC). Workers and administrators wanted help in adjusting their practice of working with women, children and families to include FASD-informed approaches.

These trainings were delivered on-site to approximately 350 people during 2014-2016. Developed by Anne Guarasci and Barb Durban with funding from PHAC, the curriculum, in the form of PowerPoint presentations, has been refined for distribution and consists of three separate presentations each with a particular focus, but all include a primer on FASD including current diagnostic terminology.

1. “Supporting Marginalized Parents who may have FASD” — This presentation focuses on what causes FASD, how it is diagnosed, and who is at risk; the complex nature of prevention and why a holistic, relational approach is required; behavioural and cognitive cues that may indicate FASD; and, the fundamentals of an FASD-informed practice.

Empower guide2. “Strategies and Structures for Supporting Marginalized Women and Families who may have FASD” — Participants explore practices and communication skills that empower and support clients and build relationships; examine individual and agency perceptions, policies and structures in order to reduce barriers to relationship and services for clients; and, develop FASD-specific communication strategies. Client “compliance” issues are re-examined within the context of brain functioning. FASD diagnostic terminology and pathways to access assessment and diagnosis are reviewed.

3. “FASD Prevention” — Using a FASD-informed approach as described in CNC guides (1,2) and the work of Deb Rutman (3), this training builds on the 4 levels of prevention of FASD in Canada (4): awareness and health promotion; brief counseling with women and girls of childbearing age; specialized prenatal support; and postpartum support.  How FASD-informed and trauma-informed approaches overlap is explored along with many strategies for working with women, including those who may have FASD, such as building relationships and reducing barriers through reflective practice, Motivational Interviewing, harm reduction, and individualized services.

The FASD-informed practice training curricula is intended for training of program coordinators and administrators, new frontline workers and seasoned workers who may benefit from a refresher. A year-long evaluation of the training was conducted by Deborah Rutman, and the results will be available for presentation in this blog space, in the next few months.

For more about FASD-informed work, see earlier posts:


REFERENCES/SUGGESTED READING

  1. Guarasci, Anne (2013). FASD Informed Practice for Community Based Programs. Burns Lake, BC: College of New Caledonia – Lakes District Campus.
  2. Guarasci, Anne (2011). Empowering Front-Line Staff and Families Through a Collection of Lived Experiences: Supporting Women Who Have Fetal Alcohol Spectrum Disorder (FASD) Behaviours and Characteristics and/or Other Related Disabilities. Burns Lake, BC: College of New Caledonia – Lake District Campus.
  3. Rutman, D. (2011). Substance using women with FASD and FASD prevention: Voices of women with FASD: Promising approaches in substance use treatment and care for women with FASD. Victoria, BC: University of Victoria.
  4. Poole, Nancy A. (2008). Fetal Alcohol Spectrum Disorder (FASD) Prevention: Canadian Perspectives. Public Health Agency of Canada: Ottawa, ON.

 

For the last four years, HerWay Home in Victoria, BC, has been providing outreach, medical and social services to pregnant and parenting women with difficult lives in a one-stop supportive environment. On June 23 from 9:00-10:00 a.m. PST, there will be a free webinar to share the results of a first-phase evaluation of HerWay.

Deborah Rutman and Carol Hubberstey of Nota Bene Consulting, and Nancy Poole of BC Centre of Excellence for Women’s Health will discuss lessons learned and promising practices, and lead a discussion on working with pregnant and parenting women affected by substance use, violence and mental health issues. With its child-focused, women-centred and family focused approach, HerWay Home encourages positive parenting and healthy outcomes for children and women.

Click here for more information and register by June 20th at http://fluidsurveys.com/surveys/bccewh/herway-home-evaluation-webinar/

To learn more about HerWay home and similar programs, see these previous postings:

 

Overview: Four Levels of FASD Prevention

Information Sheet: What Men Can Do To Prevent FASD

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