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FASD documentary to be screened at United Nations forum in New York, May 7-18, 2012
I’ve previously blogged about FASD prevention efforts in Fitzroy Crossing in Western Australia and the documentary Yajillara (For more, see the post Yajilarra: the story of the women of Fitzroy Crossing and view the 22 minute documentary Yajilarra – To dream: Aboriginal Women Leading Change in Remote Australia on the George Institute website here).
The Lililwan Project is a research collaboration between Marninwarntikura Women’s Resource Centre and Nindilingarri Cultural Health Services in Fitzroy Crossing, The George Institute for Global Health and Sydney Medical School at The University of Sydney. As part of ongoing awareness efforts, the project has produced two new documentaries: Marulu and Tristan.
(“Marulu” is a word meaning “precious, worth nurturing” in Bunaba, one of four Aboriginal language groups in the Fitzroy Valley. “Lililwan” is a Kriol word meaning “All the little ones.”)
Tristan is the story of a 12 year indigenous boy with FASD.
Tristan is being screened tonight at the Australian Consulate-General in New York. The screening will be followed by an expert discussion of the FASD research underway in Australia, led by Mr Mick Gooda, Social Justice Commissioner, Australian Human Rights Commission. Members of the panel will include: Ms June Oscar, CEO of Marninwarntikura Women’s Research Centre and a Chief Investigator of the Lililwan Project, Ms Marmingee Hand, carer of Tristan, Associate Professor Jane Latimer of the George Institute for Global Health Australia and a Chief Investigator of the Lililwan Project and Professor Elizabeth Elliott, of the University of Sydney Medical School and Chief Investigator of the Lililwan Project.
It will also be be shown at the 11th session of the United Nations Permanent Forum for Indigenous Issues in New York, May 7—18, 2012
Check out the news coverage of the film in this YouTube clip from WorldNewsAustralia. Read an article in the Lancet on the film here (Tristan’s story, May 5 2012)
The 5th National Biennial Conference on Adolescents and Adults with FASD is being held in Vancouver, BC next week and several members and friends of our Network Action Team will be presenting.
If you’re attending, be sure to check out:
Supporting Marginalized Youth Who have FASD Behaviours/ Characteristics – Lessons for Policy and Practice
Deborah Rutman and colleagues will share frontline lessons and findings from an external evaluation of a three-year youth outreach program in a small rural community. This session will highlight the complexity of life experiences of marginalized adolescents who may have FASD, and the policy and ethical issues resulting from the intersection of multiple systems (social services, justice, child welfare, health, and education).
FASD Prevention for Women Living with FASD
Noella Gentes and Dee Harvey from the InSight Mentor Program in Manitoba will focus on strategies for working with adult women who have FASD and substance use problems to prevent FASD. They will provide an overview of the InSight Mentor Program, the women served, what works and continued challenges.
(For more on this topic, see previous post FASD Mentoring Programs in Canada, December 7, 2011)
Towards an Evaluation Framework for Community-Based FASD Prevention and FASD Support Programs
Marilyn Van Bibber, Deborah Rutman, and Carol Hubberstey will describe the results of a recent project related to principles and practices for evaluation of multi-system FASD prevention and intervention programs serving pregnant women and mothers, and for multi-disciplinary programs serving diagnosed and undiagnosed youth and adults living with FASD.
Building Our Home Fires – A Women’s Health/FASD Prevention Project in the Northwest Territories
Dorothy E Badry and the Building Our Home Fires Team Members will present a poster on an ongoing participatory research project in northern Canada.
Learn more about the conference here.
Understanding the history of FASD and the origin of early prevention efforts
Some of you may be familiar with the work of historian, Janet Golden, a professor at Rutgers University. Janet is well known for her book Message in a Bottle: The Making of Fetal Alcohol Syndrome (Harvard University Press, 2005).
One reviewer described the book as “the most comprehensive and easily read text on the history, politics, public health debate, legislation, psychosocial and family dynamics, and media discussion concerning fetal alcohol syndrome (FAS). This is a must-read for any professional involved in the study of alcohol abuse and neurodevelopmental outcomes of children, fetal medicine, pediatrics, social work, psychiatry, and other areas of mental health.”
In case you don’t feel like reading an entire book, Golden gave a one hour lecture a couple of weeks ago that has now been posted on YouTube. The lecture is a cultural biography of FASD in the late 20th century and describes how FASD became viewed as a medical issue and thus a medical problem and how prevention efforts became narrowly defined as activities to support the “crusade to warn” women of the dangers of alcohol.
Read more about the history of FASD by Janet Golden
“Observing the Effects of Alcohol Abuse and Pregnancy in the Late 19th Century.” International Journal of Epidemiology 40, 2 (2011): 292-93. doi:10.1093/ije/dyr005
“A Cultural History of Fetal Alcohol Syndrome, MD Advisor 3 (2010): 22-29.
“Opinion: Stopping Fetal Alcohol Syndrome: Women Who Drink Need Treatment,” in Jacqueline Langworth, ed. Perspectives on Diseases and Disorders: Fetal Alcohol Syndrome (Greenhaven Press, 2010).
“The ‘Tempest in a Cocktail Glass’: Mothers, Alcohol, and Television, 1973-1992″ Journal of Health Politics, Policy and Law 25 (2000): 473-498.
“‘An Argument that Goes Back to the Womb:’ The Demedicalization of Fetal Alcohol Syndrome, 1973-1992,” Journal of Social History 33 (1999): 269-290.
NAT member Narine Margaryan, Coordinator of FASD Services at the Yellowknife Association for Community Living, has been coordinating a poster contest at two local schools. Students were given the task of creating posters with an FASD prevention message.
The image above is the winning poster by Emily Sabourin and Taylor Maracle from William McDonald School. Click here to see the other winning poster as well as what the winners received. Hurray for creativity!
There is lots of debate about what makes an effective prevention message so it’s really interesting to think about the issue from the perspective of youth. For more on the subject, see earlier posts:
- Are shock tactics effective? (March 22, 2011)
- Should Awareness Campaigns Be Fear-based or Support-based? (April 20, 2011)
Banff River. Image by Nav A., via flickr
This year’s Banff International Conference on Behavioural Science is on “Fetal Alcohol Spectrum Disorder: Challenges in Practice, Research and Policy.” The conference is being held March 18-21, 2012 and prevention will be one of the key areas of focus.
NAT members Dorothy Badry (University of Calgary) and Amy Salmon (Sheway, Vancouver) will be presenting on Monday afternoon on FASD Prevention and Social Determinants of Women’s Health: Assessing the Evidence and again on Wednesday afternoon on Community-based Approaches to FASD Prevention: Examples from Front-Line Practice. Their workshops will cover issues such as:
- What is the current state of evidence for FASD prevention efforts addressing social determinants of women’s health?
- How do social determinants of health increase or mitigate risk for FASD in alcohol-exposed pregnancies?
- How to address practical challenges to implementing evidence-based approaches to FASD prevention education and programming at the community level
- An introduction to three different programs: the Sheway Project in Vancouver’s Downtown Eastside; the Brightening Our Homefires Project in four Dene and Inuit communities in the Northwest Territories; and birth mother mentoring and advocacy programs in southern Alberta.
If you’re interested in learning more about the work that Dorothy and Amy are involved with, I’ve listed some resources and links below.
Learn more
Bell, K., McNaughton, D., and Salmon, A. (2009). Medicine, morality and mothering: public health discourses on foetal alcohol exposure, smoking around children and childhood overnutrition. Critical Public Health, 19(2).DOI: 10.1080/09581590802385664
Brochure: SHEWAY: A Community Project for Women and Children
FASD Network Action Team on FASD Prevention from a Women’s Health Determinants Perspective. (2010). 10 Fundamental components of FASD prevention from a women’s health determinants perspective.
FASD Network Action Team on FASD Prevention from a Women’s Health Determinants Perspective . (2009). Taking a relational approach: the importance of timely and supportive connections for women.
Marshall, S.K., Charles, G., Hare, J., Ponzetti, J.J., and Stokl, M. (2005). Sheway’s services for substance using pregnant and parenting women: evaluating the outcomes for infants. Canadian Journal of Community Mental Health, 24(1): 19-33.
Poole, Nancy. (2000). Evaluation report of the Sheway Project for high-risk pregnant and parenting women. Vancouver: British Columbia Centre of Excellence for Women’s Health.
Rasmussen, C., Kully-Martens, K., Denys, K., Badry, D., Henneveld, D., Wyper, K., Grant, T. (2010). 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, DOI: 10.1007/s10597-010-9342-0.
Salmon, A. and Clarren, S.K. (2011). Developing effective, culturally appropriate avenues to FASD diagnosis and prevention in northern Canada. International Journal of Circumpolar Health, published online 29.08.2011. PMID: 21878184. Download the free full-text here.
Salmon, A. (2010). “Strength and support: A women’s perspective.” In Jonsson, E., Dennett, L., Littlejohn, G., Fetal Alcohol Spectrum Disorder (FASD): Across the Lifespan: Proceedings from an IHE Consensus Development Conference 2009. Videos of the full conference can viewed here. Hard copies of the book can be ordered from the Institute of Health Economics or downloaded as a PDF.
Upcoming workshops in northern BC
If you’re at all interested in the latest findings from neuroscience on mental health and brain development and what you can do in practice to support at-risk infants (including infants with FASD), then you’d probably love to attend a 1 day workshop with Evelyn Wotherspooon.
There are three workshop dates:
- February 27, 2012 – Fort St. John
- February 29, 2012 – Terrace
- March 2, 2012 – Prince George
The workshops are free and intended primarily for therapists, support workers, key workers, social workers, teachers, teacher aides, childcare workers, infant development workers, public health nurses, and Aboriginal service providers. View the workshop poster with registration details here.
If you can’t attend the workshops, Evelyn Wotherspoon has a website chock full of resources – online lectures, news articles, information sheets – covering issues ranging from child protection and family law to trauma and caregiving.
NAT member, Deb Rutman, will be speaking at the FASD Here and Now conference on Feb 14-15 in Saskatoon, Saskatchewan. The event features expert speakers from across Western Canada and is hosted by the FASD Support Network of Saskatchewan.
Deb will be sharing some of her recent work in the areas of promising approaches in working with women with FASD, parenting with FASD, and the legal system’s criminalization of disability. If you’re interested in her most recent work on the Substance Using Women with FASD and FASD Prevention project, you can click here to download the three project reports and click here for a powerpoint presentation about the project from the Issues of Substance conference last fall.
The FASD Support Network of Saskatchewan is a community based parent-led provincial organization. Visit their website to learn more about this organization.
Media coverage of meconium testing fails to raise important questions
Last week, CBC News reported on a study currently happening in PEI (Baby poop study tracks alcohol use, November 8, 2011). This study is testing the meconium (the first stools of a baby) of every baby born in the province to try and get a sense of the prevalence of alcohol-exposed pregnancies.
According to the article, the study is intended to provide the “first accurate data on the number of babies being affected by Fetal Alcohol Syndrome on P.E.I.” Of course, we know that is not true. Meconium testing for alcohol use during pregnancy only tells us about alcohol use in the second and third trimesters of pregnancy. Like all tests, it has a tendency to produce false positives and negative results. Further, positive test results do not equal a diagnosis of FASD in an infant – one study suggests that 40% of fetuses exposed to moderate to high amounts of alcohol during pregnancy may develop FASD (Koren, Huston, and Gareri, 2008).
The article also reports that researchers did not require consent from parents to do the test but did not provide a rationale for this.
In a recent post (The Ethics of Meconium Screening, October 3, 2011), I mentioned a 2 1/2 hour webinar on meconium testing held at the 12th Annual Fetal Alcohol Canadian Expertise (FACE) Research Roundtable. As well as being able to view the entire webinar on the Canadian Association of Pediatric Health Centres website, you can listen to a podcast of the webinar or read a summary paper recently published in the Journal of Population Therapeutics and Clinical Pharmacology.
Bernard Dickens, one of the speakers at the webinar, also just published a paper on legal and ethical issues surrounding meconium testing which I think is worth reading – often, issues like meconium testing become viewed primarily as public health issues and I think there are some civil rights issues in this instance that are being neglected. For example:
- Who owns meconium?
- How can we address the assumption by many parties that meconium test results, which tell us about potential alcohol use during pregnancy, are not by themselves a child protection concern?
- If universal testing is considered too costly, is it even possible to conduct targeted testing of “high risk” groups in the population in a way that that does contribute to negative stereotyping or racial/ethnic profiling? (Let me be blunt: are Aboriginal groups being consulted with all these ongoing investigations into how meconium testing can be incorporated into newborn care?)
On the issue of testing a baby’s meconium without maternal consent, Dickens comments:
“The fact that meconium may lawfully be tested without a mother’s consent raises the issue of whether it is ethical to employ a power allowed by law (since not everything that is legal is ethical), and whether mothers should at least be informed that this test will be conducted. Where it is conducted for anonymous prevalence studies, no disclosure may be required, because the test result is not relevant to the individual child’s care.
If testing is undertaken to provide clinical evidence of children’s prenatal exposure to alcohol, however, some neonatal facilities not seeking consent do inform mothers that their newborns’ meconium will be tested. They may also respect mothers who say that they object to such a test, by not conducting it. This is legally questionable, however, if the tests are proposed for the particular children’s care, since parents are legally required to provide or consent to medical services, including tests, that are in their children’s interests.”
References:
Dickens, B.M. (2011). Legal and Ethical Considerations in Meconium Testing for Fetal Exposure to Alcohol. Journal of Population Therapeutics and Clinical Pharmacology, 18(3):e471-e474. (Free full text here).
Koren G, Hutson J, Gareri J. (2008). Novel methods for the detection of drug and alcohol exposure during pregnancy: implications for maternal and child health. Clin Pharmacol Ther, 83(4):631-4.
Macleod, S. and Koren, G. (2011). Meconium Testing for Fatty Acid Ethyl Esters: A 2011 Status Report. Journal of Population Therapeutics and Clinical Pharmacology, 18(3):e500-e502. (Free full text here)
Webinar Briefing on Monday, November 14, 2011 2:00 PM – 3:30 PM EST
A report called Kiskisik Awasisak: Remember the Children. Understanding the Overrepresentation of First Nations Children in the Child Welfare System will be released next week and there will be a webinar briefing on the report on November 14th @ 2pm (EST).
The report is based on the largest study of child welfare investigations involving First Nations children ever conducted in Canada. The study examines data collected from 89 provincial/territorial agencies and 22 First Nations and urban Aboriginal agencies and the findings are intended help understand the factors contributing to the over-representation of First Nations children in the child welfare system and to make changes to funding and practice models.
Canada’s child welfare system has a historical pattern of removing Aboriginal children from their homes. You can learn more about this issue by examining the Aboriginal Child Welfare section of the Canadian Child Welfare Research Portal.
One component of the report documents issues that female caregivers were dealing with at the time of the investigations and which potentially influenced their abilities to care for their children. Case workers noted:
- multiple risk factors in 56% of First Nations child investigations (vs. 34% of non-Aboriginal child investigations).
- domestic violence victimization in 43% of First Nations child investigations (vs. 30% of non- Aboriginal child investigations).
- alcohol abuse in 40% of First Nations child investigations (vs. 8% of non-Aboriginal child investigations).
- lack of social supports in 37% of First Nations child investigations (vs. 30% of non-Aboriginal child investigations).
- drug/solvent abuse in 25% of First Nations child investigations (vs. 10% of non-Aboriginal child investigations).
- history of foster/group home care in 13% of First Nations child investigations (vs. 5% of non- Aboriginal child investigations).
It would be interesting to see how these issues were addressed after they were identified. For example, did learning that a woman has a substance use problem lead to support in accessing treatment or child apprehension? Or, how many apprehensions could have been averted if the woman had identifiable social supports?
You can register for the webinar here and learn more about the study here.
Public dialogue explores our complex cultural relationship with alcohol
“Is drinking more a cultural expectation than an individual choice?” This is the topic of a free public event being held next week as part of the Issues of Substance conference in Vancouver, BC (Nov 6-9, 2011).
While the event is not specific to pregnancy or women, I think it might explore how alcohol is embedded in our daily lives and why there is often so much resistance to the notion of abstinence from alcohol during pregnancy.
Our Dance with Alcohol: A free public dialogue exploring our complex cultural relationship with alcohol
November 8 – 7:30-9:30 pm
Goldcorp Centre for the Arts
3200 Djavad Mowafaghian Cinema
149 West Hastings Street
Vancouver, BC
The Issues of Substance conference (IOS) is held every two years in November to complement National Drug and Addictions Awareness Week and is hosted by the Canadian Centre on Substance Abuse. This year, the organizers expect over 600 participants, including addiction specialists (e.g., treatment providers, clinical staff, public health nurses), allied professionals (e.g., hospital staff, law enforcement personnel, corrections workers), researchers, academics, policy makers and private sector professionals.
Several sessions focus on issues of women and substance use and many members of our Network Action Team will be presenting. If you’re attending the conference, be sure to check out:
Sunday, November 6th
1:30-5:30 Digital Narratives: Women and Treatment (Deborah Chansonneuve, Violet Naytowhow, Sharon Acoose, Arlene Hache, Jim Cincotta, Betty Head, Nancy Poole, Colleen Dell)
Monday, November 7th
11:00-12:30 Substance Using Women with FASD and FASD Prevention: Putting Promising Approaches into Practice for Substance Use Treatment and Care (Lynda Dechief and Deborah Rutman)
1:30– 3:00 Findings from a Virtual Community on Aboriginal Women’s Treatment (Nancy Poole, Deborah Chansonneuve, Colleen Dell, Arlene Hache, Elizabeth Head, James Cincotta)
1:30– 3:00 From Stilettos to Moccasins – A Guide for Group Discussion (Colleen A. Dell, Sharon Acoose, Martina L. Mathewson, Shannon Taylor)
3:30-5:00 Girls and Alcohol (Nancy Poole, Lorraine Greaves,Gerald Thomas)
Tuesday, November 8th
1:30 – 3:00 Networks among Canadian Agencies Serving Women with Addictions (Wendy Sword, Alison Niccols, Maureen Dobbins, Reza Yousefi-Nooraie, Ellen Lipman)
Just to get you excited for the conference, I thought I’d include this YouTube video in today’s posting. Colleen Dell from the University of Saskatchewan will be presenting on her amazing work addressing substance use for Aboriginal women. Check out some of her work here. The video below is some of her research findings “translated” into music.
