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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

'Family Caregivers Unite! I VoiceAmerica

University of Calgary professor and Canada FASD Research Network member, Dorothy Badry, was interviewed in December 2014 on the live talk radio program Family Caregivers Unite!

The one hour episode, hosted by Dr. Gordon Atherley, focused on the topic of “Developing Services for Canadians Living with FASD.”

Dr. Badry discusses her earlier PhD work,  ‘Becoming a Birth Mother of a Child with Fetal Alcohol Syndrome’, which reviewed the lives of 8 women aged 25 to 60 who gave birth to children diagnosed with FAS. She talks about her life, career, and her experience of family caregiving for close family members with serious health conditions.

Dr. Badry, drawing upon her experiences in the social work field, also discusses types of services provided for individuals with FASD and their families. She also touches on prevention issues such as increasing rates of binge drinking in youth, the Parent-Child Assistance Program, and the role of men in supporting women.

Dr. Badry is currently the co-chair of the Education and Training Council of the Alberta FASD Cross Ministry Committee and a member of the Prairie Child Welfare Consortium.

Listen to the interview here (via streaming, in iTunes or download the MP3).

One of her recent projects has been the development of the Caregiver Curriculum on FASD on the http://www.fasdchildwelfare.ca website.

Also check out this article on how Dr. Badry’s work is influencing work in indigenous communities in Australia: Canadian fetal alcohol programs inspire Australian researcher (November 26. 2014).

'Canadian fetal alcohol programs inspire Australian researcher I

 

 

Intergenerational Patterns, Parenting, and FASD

A paper published in the Journal of Transcultural Nursing by Suzanne Johnston and Joyceen Boyle (based on Johnston’s PhD work) explores the experiences and strengths of Aboriginal mothers raising children affected by FASD.

At a practical level, this ethnographic study aims to demonstrate what it is like for mothers to raise teenagers who have FASD, what their struggles are, how they meet challenges, what is helpful, and what is not.

The paper also explores a range of issues using a postcolonial framework (for more on this, see earlier post Postcolonial Theory for Beginners, September 1, 2010). This perspective allows the study authors to explore intergenerational patterns related to parenting and FASD. The authors connect alcohol misuse during pregnancy to colonial pressures and effects that have continued to exist after seven generations.

“…the root causes are undoubtedly related to the historical and collective emotional injury Aboriginal peoples have experienced as a result of colonialism. This injury manifests itself in various behaviors, including the abuse of alcohol, which leads to FASD, among other problems. According to the [study] participants, they have ignored and suppressed the trauma associated with FASD because there has been little support for dealing with associated feelings that remain unresolved and passed down through generations.

For example, individuals pass on unhealthy ways of behaving or coping that they use to protect themselves from their pain and trauma, such as abusing alcohol or drugs; these behaviors are modeled for their children, sometimes those involved even being aware of these dynamics.” (p. 63)

The women interviewed in this study describe feelings of blame and shame and experiences of marginalization in their lives. Yet, this study clearly works towards debunking stereotypes by demonstrating the adaptability and increasing strength of Aboriginal mothers caring for adolescents with FASD.

For more on this topic, see earlier posts:

References

 Johnston, S. and Boyle, J.S. (2013). Northern British Columbian Aboriginal Mothers: Raising Adolescents With Fetal Alcohol Spectrum Disorder. Journal of Transcultural Nursing, 24(1):60-7. DOI:10.1177/1043659612452006

Johnston, M.J. (2008). Northern British Columbia Aboriginal Mothers: Raising Adolescents with Fetal Alcohol Spectrum Disorder. (Doctoral Dissertation). Retrieved from The University of Arizona – College of Nursing.

Forsaken-ES cover

The Missing Women Commission of Inquiry was established in September 2010 to inquire into the “(BC Missing Women) Investigation and events leading up to the arrest and conviction of Robert W. Pickton and a broader examination of the manner in which cases involving missing women are investigated.”

The final report, including 63 recommendations, by Commissioner Wally Oppal was released in mid-December.

Oppal begins his report by looking at the context of the lives of the women. He states:

Each missing and murdered woman had a unique life and story. At the same time, this group of women shares the experience of one or more disadvantaging social and economic factors: violence, poverty, addiction, racism, mental health issues, intergenerational impact of residential schools and so on. While not every woman experienced each of these conditions, most had experienced several of them. (p. 12)

While the story of the missing and murdered women might seem unrelated to FASD prevention, health and social service providers who work with women who have experienced (and continue to experience) these interlinking factors – violence, poverty, addiction, racism, mental health issues, intergenerational impact of residential schools – would argue differently. Many women who are at risk for having an alcohol-exposed pregnancy are facing one or more of these issues.

For example, Susan Astley and her colleagues conducted a seminal piece of research in Washington State, in which they followed up with 160 women who had children diagnosed with fetal alcohol syndrome. Forty of the women could not be contacted due to confidentiality issues, another 40 had died or disappeared; of the 80 women they interviewed, they found:

  • 100% had been seriously sexually, physically, or emotionally abused;
  • 80% had a major mental illness, with the most prevalent (77%) being Post-Traumatic Stress Disorder (PTSD);
  • 80% still lived with men who did not want them to stop drinking; and
  • 46% were still at risk of having an alcohol-exposed pregnancy.

As another example – some of you may be familiar with the InSight Mentoring Program in Manitoba, an outreach program that provides intensive support to women who are pregnant or have recently had a baby and have substance use problems. Of the first 60 women to enroll in the program, 100% reported experiencing abuse or violence at some point in their lives (Umlah & Grant, 2003).

These research findings illustrate the importance of  recognizing and understanding the role violence and other related factors  plays in the lives of pregnant women struggling with their use of drugs or alcohol. Reports like the one from the Missing Women Commission of Inquiry serve as a reminder that these issues are not isolated events or confined to pregnancy and require broader systemic changes.

You can download the full report from http://www.missingwomeninquiry.ca. For recent media coverage, see:

References:

Astley SJ, Bailey D, Talbot T, Clarren SK (2000). Fetal alcohol syndrome (FAS) primary prevention through FAS Diangosis: II. A comprehensive profile of 80 birth mothers of children with FAS. Alcohol & Alcoholism, (35) 5:509-519.

Oppal, Wally T. (2012). Forsaken: the Report of the Missing Women Commission of Inquiry: Executive Summary. Available from: http://www.missingwomeninquiry.ca/

Umlah, C. & T. Grant (2003). Intervening to prevent prenatal alcohol and drug exposure: the Manitoba experience in replicating a paraprofessional model. Envision: The Manitoba Journal of Child Welfare, 2(1): 1-12.

Overview: Four Levels of FASD Prevention

Information Sheet: What Men Can Do To Prevent FASD

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