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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)

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:

 

PCAP quilt squareParent-Child Assistance Programs (PCAP) are one important approach to FASD prevention in a number of provinces in Canada and the U.S. These programs use a relational, women-centred, strengths-based approach, which is proven to be effective in FASD prevention [1, 2].

As a visual way to express their experiences of mentorship within Alberta’s PCAP program, women came together in workshops across the province to create individual quilt squares for a larger quilt.

The finished quilt, pictured below, captures the hope, resilience, acceptance and connection that participation in the PCAP program has brought them and their children.

revisedapril4 quilt photoIMG_7064

Described as lively, creative, interactive and dynamic, the workshops were held in Calgary, Edmonton and several rural communities; women were supported by their mentors in getting to them. The workshops built connection between women as well as long-term relationships with their children and their mentors.

Developed and researched by Dorothy Badry, Kristin Bonot and Rhonda Delorme, a full description of the project is here.This is the second quilt project from Alberta’s PCAP program; the first quilt was made by mentors (read more about that project here).

To read earlier blogs about FASD primary prevention projects in Canada follow the links below:

The Mother-Child Study

H.E.R. Pregnancy Program

The Mothering Project

HerWay Home Program

FASD Prevention in Saskatchewan

Harm Reduction and Pregnancy

1. Thanh, N.X., et al., An economic evaluation of the parent-child assistance program for preventing fetal alcohol spectrum disorder in Alberta, Canada. Adm Policy Ment Health, 2015. 42(1): p. 10-8. View article link
2. Grant, T.M., et al., Preventing alcohol and drug exposed births in Washington state: Intervention findings from three parent-child assistance program sites. The American Journal of Drug and Alcohol Abuse, 2005. 31(3): p. 471-490. View PDF

 

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

Overview: Four Levels of FASD Prevention

Information Sheet: What Men Can Do To Prevent FASD

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