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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 Slides – Recording
Trauma Informed
Pregnancy, Alcohol, and Trauma-informed Practice, The Prevention Conversation
Trauma-informed Approaches to FASD Prevention – Webinar View Slides – Recording
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
Dorothy Badry was honoured by the Premier’s Council on the Status of Persons with Disabilities for Alberta on December 2nd. Dorothy has been a long-time advocate, researcher and educator on the impact of FASD (and a dedicated member of the Prevention Network Action Team). Her work has contributed to FASD being recognized as a disability. For families and individuals affected by FASD, that recognition has made a huge difference.
In a University of Calgary article written about her, she describes FASD as an health “outcome” – a key shift from early stigmatizing assessments. This allows for a relational approach that includes women, children, families, and communities and for inclusive and multi-level prevention/intervention strategies.
An original member of the Canada FASD Research Network, we have benefited from Dorothy’s active participation and counsel. She has been featured in some of our previous blogs for her work at with University of Calgary, Alberta province, and several FASD-related programs. We are happy to feature her once again for this well-deserved honour. Congratulations, Dorothy Badry.
For related blogs, see previous postings:
“Developing Services for Canadians Living with FASD” interview with Dorothy Badry on Family Caregivers Unite! January 5, 2015
Alberta’s PCAP Women’s Quilt: “Creating a bond . . . Building a relationship” April 22, 2016
The work of the Network Action Team on FASD Prevention from a Women’s Health Determinants Perspective (CanFASD Research Network) April 11, 2016
Webinar: “Caregiving, FASD, and Alcohol: Caring about FASD Prevention” – September 9, 2015 August 25, 2015
First Peoples Child & Family Review journal: Special Issue on FASD December 9,
Case Management to Prevent Fetal Alcohol Spectrum Disorder September 20, 2013
Women’s health and FASD prevention in a special issue of the International Journal of Circumpolar Health August 6, 2013
Brightening Our Home Fires: An FASD Prevention and Women’s Health Project in Canada’s Northwest Territories May 6, 2013
The 5th International Conference on Fetal Alcohol Spectrum Disorder: Special Session on FASD Prevention January 14, 2013
Look for us at the 5th National Biennial Conference on Adolescents and Adults with FASD (April 18-21, 2012) April 9, 2012
Parent-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.
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:
FASD Prevention in Saskatchewan
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
The Alberta FASD Learning Series helps individuals with FASD and their caregivers to learn more about FASD and how to support a person with FASD. The webcast and videoconference educational sessions cover a broad range of topics that target both urban and rural audiences.
On January 21, 2015 (9-11am), the topic in the series will be The Prevention Conversation Project. The aim of this project is to support open and non-judgemental conversations with women and their support systems about alcohol and pregnancy.
For registration information and more information about the learning series, visit the Alberta FASD website here.
Learn more about The Prevention Conversation on the Edmonton and area Fetal Alcohol Network Society website here.
The Parent–Child Assistance Program (PCAP) began in 1991 at the University of Washington. It is an intensive three-year one-on-one mentoring program for women at high risk of having a child born with FASD.
The first PCAP programs in Alberta started in 1999 (two in Edmonton and one in Lethbridge). In 2013, there were over 20 programs across the province that provided PCAP services.
In 2013, the Alberta PCAP Council collaborated with the ACCERT Lab and Dr. Jacquie Pei from the University of Alberta on a qualitative research project to collect the experiences of PCAP mentors. This quilting project explored the experiences of 46 women and men working in FASD prevention programs across the province.
Each participant created a square that depicted the experience of working in a PCAP program. The final quilt is comprised of 55 unique squares, each one telling one part of the story of individuals and families affected by FASD and the work of PCAP mentors to help prevent FASD.
Read more about the making of the quilt in the Alberta FASD Cross-Ministry Committee’s 2011/2012 Annual Report and in this article:
Job, J. M., Poth, C., Pei, J., Wyper, K., O’Riordan, T., and Taylor, L. (2014). Combining visual methods with focus groups: An innovative approach for capturing the multifaceted and complex work experiences of Fetal Alcohol Spectrum Disorder prevention specialists. The International Journal of Alcohol and Drug Research, 3(1), 71-80. http://dx.doi.org/10.7895/ijadr.v3i1.129. (Open Access)
The quilt is “on tour” – find out where you can see the quilt by following the Alberta PCAP Council Facebook page.
Learn more about the Alberta PCAP programs here.
For more on the Parent-Child Assistance Program in Canada, see earlier posts:
- Economic Evaluation of the Parent-Child Assistance Program in Alberta, Canada (May 5, 2014)
- FASD Mentoring Programs in Canada (December 7, 2011)
Earlier this year, Sherri Di Lallo wrote an article for the journal Nursing for Women’s Health called “Prenatal Care Through the Eyes of Canadian Aboriginal Women” (Vol 18, Issue 1, pp. 38-46).
The article provides an overview of the Aboriginal Prenatal Wellness Program (APWP) in central Alberta, Canada. The four Maskwacis First Nations of Hobbema border Wetaskiwin and Ponoka Counties in Central Alberta and have a total population of 13,784 people.
The Aboriginal Prenatal Wellness Program is a culturally safe program that provides client-centered prenatal care that is designed to empower women, families and communities.
The program was created in 2005 to serve Aboriginal women who weren’t accessing the traditional system for prenatal care. Between 2002 and 2007, 16.5 percent of all women in Central Alberta who delivered at Wetaskiwin Hospital and Care Centre had received little or no prenatal care prior to their delivery. Of those, 82 percent were from the Maskwacis area.
The article discusses aspects of providing culturally safe care, including the importance of assessing cultural biases, understanding the roots of health disparities in Aboriginal communities, and understanding cultural history and current practices. Central to cultural safety is self-reflection and building trustful and respectful relationships.
The article provides a summary of an evaluation of the program. Overall, between November 2005 and February 2009, 281 women participated in the program and the percentage of women having limited or no prenatal care dropped.
In terms of substance use, forty-four percent of women stated that they quit drinking and using drugs once they found out they were pregnant while 39 percent decreased their smoking and 16 percent quit smoking.
For more on cultural safety and FASD prevention, see earlier posts:
- First Peoples Child & Family Review journal: Special Issue on FASD (December 9, 2013)
- Health Professionals Working With First Nations, Inuit, and Métis Consensus Guideline from the Society of Obstetricians and Gynaecologists of Canada (July 21, 2013)
- Decolonizing FASD Policy in Canada (October 8, 2012)
- Cultural Safety and FASD Prevention (August 23, 2012)
- Postcolonial Theory for Beginners (September 1, 2010)
The Government of Alberta is hosting the 2014 FASD Conference on October 20-21, 2014 in Edmonton, Alberta, Canada.
The multidisciplinary conference focuses on Fetal Alcohol Spectrum Disorder and its impact on individuals, families, communities and society at large.
The conference will feature keynote speakers, Hayley Wickenheiser, Michael Kendrick, Peter Choate and Drew Dudley, and over 30 breakout sessions discussing the latest practices in FASD prevention, assessment and support.
This conference will be of interest to: caregivers and families, individuals with FASD, teachers, teacher aides, social workers, nurses, speech language pathologists, physical therapists, occupational therapists, psychologists, physicians, alcohol and drug workers, mental health workers, community workers, family support workers, program providers, vocational rehab service providers, elected officials, government ministries, lawyers and policy-makers.
Registration is now open.
The Parent–Child Assistance Program (PCAP) began in 1991 at the University of Washington. It is an intensive three-year one-on-one mentoring program for women at high risk of having a child born with FASD.
The primary aim of the program is to prevent future alcohol and drug exposed pregnancies by encouraging the use of effective contraceptive use, by helping women abstain from or decrease their use of alcohol and drugs and by addressing the range of factors that contribute to women’s substance use, including poverty, isolation, and lack of parenting support. The program uses a home visiting/case management approach and is based on principles of harm reduction.
The model has been replicated and evaluated across North America and has been found to be effective in a number of ways.
A recent study conducted an economic evaluation of the PCAP program in Alberta. Between 2008 and 2011, 366 women participated in 25 P-CAP programs across the province.
The evaluation estimated that the program prevented approximately 31 (range 20–43) cases of FASD among the 366 clients in a 3-year period which resulted in a cost-benefit of approximately $22 million.
For more on the Parent-Child Assistance Program in Canada, see earlier posts:
- FASD Mentoring Programs in Canada (December 7, 2011)
- Alberta’s First Steps Program (April 5, 2011)
References
Rasmussen, C., Kully-Martens, K., Denys, K., et al. (2012). The effectiveness of a community-based intervention program for women at-risk for giving birth to a child with fetal alcohol spectrum disorder (FASD). Community Mental Health Journal, 48, 12–21.
Thanh, N.X., Jonsson, E., Moffat, J., Dennett, L., Chuck, A.W., and Birchard, S. (2014). An Economic Evaluation of the Parent-Child Assistance Program for Preventing Fetal Alcohol Spectrum Disorder in Alberta, Canada. Administration and Policy in Mental Health and Mental Health Services Research.
Yesterday, the Alberta government announced that liquor stores, restaurants and bars are required to display signs about FASD prevention to help raise awareness of FASD.
While increasing awareness about FASD and the harms of alcohol use during pregnancy is very important, it’s very interesting that this announcement (as well as other awareness initiatives) rarely discuss whether FASD signage is helpful or effective.
Several jurisdictions, including the United States, France, Russia, South Africa, and the Yukon and Northwest Territories in Canada, have regulations requiring warning labels related to drinking during pregnancy and/or other risks.
A recent review on the effectiveness of alcohol warning labels in FASD prevention found that:
While alcohol warning labels are popular with the public, their effectiveness for changing drinking behavior is limited. Available research suggests that for maximum effect, alcohol warning labels should speak clearly about the consequences of alcohol consumption and should also be coordinated and integrated with other, broader social messaging campaigns. Use of alcohol warning labels related to alcohol and pregnancy must be carefully considered; their messaging has the most influence on low-risk drinkers, and to date they have not been shown to change the drinking behavior of those who drink heavily or binge during pregnancy. However, alcohol warning labels have been shown to stimulate conversations about alcohol consumption and may play a role in shifting social norms to reduce risks.
There are so many types of signange these days – from posters to videos to coasters to pregnancy test dispensers – that it’s hard to evaluate each approach effectively. But it does seem clear that these types of efforts may increase knowledge about the risks of drinking during pregnancy but have little impact on women’s behaviours.
So, it’s always a little worrisome when awareness campaigns are accompanied by discussions of bystander interventions. Manmeet S. Bhullar, Alberta Minister of Human Services is quoted in the Alberta press release as saying:
“FASD is 100 per cent preventable, and like drinking and driving, we all have a role to play to make drinking while pregnant a social taboo. The effects of FASD on children are devastating, but through common sense initiatives like this, we will bring instances of FASD down by raising needed awareness and encouraging people to step up and say ‘no’ when they see someone drink alcohol while pregnant.”
FASD is arguably NOT 100% preventable – addiction is common in our society, alcohol use often happens before a woman recognizes that she is pregnant, and is linked to issues such as poverty and gender-based violence. But, more importantly, fear of stigma and judgement is a major reason for many pregnant women to avoid seeking help if they are having a difficult time stopping drinking. For women who are at the highest risk of having a child with FASD (and who research shows are least likely to be influenced by awareness campaigns), bystander interventions where people step up and say ‘stop drinking’ will likely make things worse.
See the media release from the Alberta Gaming and Liquor Commission here.
For helpful information about alcohol and pregnancy, including FASD prevention, see the Alberta government’s Healthy Pregnancies website here.
For more on FASD prevention in Alberta, see earlier posts:
- Impact Evaluation of the Healthy, Empowered and Resilient (H.E.R.) Pregnancy Program in Edmonton, Alberta (February 7, 2014)
- Poster Campaign from the Alberta Gaming and Liquor Commission (April 30, 2013)
- Tracing the History of FASD in Alberta (November 13, 2012)
References
Thomas, G., Gonneau, G., Poole, N., & Cook, J. (2014). The effectiveness of alcohol warning labels in the prevention of Fetal Alcohol Spectrum Disorder: A brief review. The International Journal Of Alcohol And Drug Research, X(Y), N-M. doi:10.7895/ijadr.vXiY.126 (Open access)
The FASD Alberta Cross Ministry Initiative has a new website. The site profiles ongoing work by the Government of Alberta and many community partners to improve outcomes for people of all ages who are living with FASD in Alberta.
The website includes:
- Access to the FASD Learning Series, with a new archived section that allows you to search for sessions on specific topics or by presenter
- A discussion forum where you can ask questions about FASD and share stories and experiences
- Upcoming FASD-related events that are happening across Alberta
- Iinformation about FASD and how it affects people living with FASD, their families and caregivers, and the community
The Healthy Pregnancies section has a page called “Preventing FASD at Pregnancy” which does a fantastic job of summarizing what is known about the lives of women who are at risk of having problems with their pregnancy because of substance abuse. It discusses why some women use substances during their pregnancy and effective approaches for working with women by health and social service providers.
