The work of the Network Action Team on FASD Prevention from a Women’s Health Determinants Perspective (CanFASD Research Network)

 

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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

FASD Prevention in Australia

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Elizabeth Elliott recently wrote a short article describing current FASD prevention efforts in Australia for the journal Public Health Research and Practice (available here).

Increasing awareness and understanding of FASD has resulted in a number of positive developments at a national level, including a federal parliamentary inquiry into FASD (2011), the development of an Australian Government action plan to prevent FASD (2013) and the announcement of government funding to progress the plan and appoint a National FASD Technical Network (June 2014).

Some of the earliest FASD prevention activities in Australia were led by indigenous communities. In 2007, a group of Aboriginal women from Fitzroy Crossing in remote northern Western Australia led a campaign to place a ban on the sale of full strength alcohol in their community.

This led to the Lililwan Project, the first ever prevalence study of FASD in Australia and a partnership between Nindilingarri Cultural Health Services, Marninwarntikura Woman’s Resource Centre, the George Institute for Global Health and the Discipline of Paediatrics and Child Health at The University of Sydney Medical School.

This ‘research in action’ project included diagnosis and development of individualised management plans to address the health issues of each child. Earlier this year, the researchers reported that one in eight (or 120 per 1000) children born in 2002 or 2003 in the Fitzroy Valley have FAS.

In 2009, the National Health and Medical Research Council revised the guidelines regarding alcohol use in pregnancy to state “For women who are pregnant or planning a pregnancy, not drinking is the safest option.”

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In 2014, the Women Want to Know project was launched. Developed by the Foundation for Alcohol Research and Education (FARE) in collaboration with leading health professional bodies across Australia and with support from the Australian Government Department of Health, the project encourages health professionals to routinely discuss alcohol and pregnancy with women in keeping with the revised guidelines.

FARE also launched the Pregnant Pause campaign in 2013 to encourage ‘dads-to-be’ and all Australians to support someone they care about through their pregnancy by taking a break from alcohol.

November 2013 also marked the first Australasian Fetal Alcohol Spectrum Disorders Conference  held in Brisbane.

Organizations such as the National Organisation for FASD Australia have taken a leadership role in education and advocacy related to FASD, including advocating for pregnancy warning labels on alcohol.

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Drinkwise, an alcohol industry-funded organization, has voluntarily developed ‘consumer information messages’ such as ‘It is safest not to drink while pregnant’ and ‘Kids and Alcohol Don’t Mix.’ However, an audit found that 26% of products carried a DrinkWise alcohol pregnancy warning label. (Visit Drink Tank for a discussion of alcohol industry led product labeling in Australia).

For more on FASD prevention in Australia, see earlier posts:

The Mother-Child Study: Evaluating Treatments for Substance-Using Women

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Mothercraft’s Breaking the Cycle (BTC) in Toronto is one of Canada’s first prevention and early intervention programs for pregnant women and mothers who are substance-involved and their young children.

The program’s goal is to reduce risk and enhance the development of substance-exposed children by addressing maternal substance use problems and the mother-child relationship.

Historically, treatments for substance use tended to minimize gender roles and, in particular, mothering relationships. Contemporary integrated treatments for substance use often emphasize gender-specific issues within the treatment setting, such as trauma (historical and/or present, including domestic violence), depression and other mental health concerns, and adoption of harm reduction goals with respect to substance use. Contemporary integrated treatments have also evolved to acknowledge the importance of the mothering role for women.

Profile of BTC families

This evaluation report described the findings of the Mother-Child Study. The study evaluated and compared the Breaking the Cycle program model of relationship-focused service delivery and its effects on mothers and children with a group of similar women who received a more standard contemporary integrated treatment for substance use issues.

The findings of the Mother-Child Study highlight the critical role of relational-focused interventions in supporting change for substance-involved mothers and their children.

Program features that made a difference for women’s outcomes included:

  • Supporting women to learn about relationships in a number of different ways
  • Making the focus on relationships an integral part of substance use treatment
  • Recognizing that increased relationship capacity with their children enriches the lives of women

Program features that made a difference for children’s outcomes included:

  • Providing integrated early intervention programs
  • Providing comprehensive, multimethod assessments
  • Prioritizing early intervention services which support the mother-child relationship

Importantly, the study found that children, even those exposed to substances during pregnancy, do better when mothers have relationship-focused intervention

Read the report, take a look at summary fact sheets and learn more about the Breaking the Cycle program at www.mothercraft.ca.

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Alberta Parent-Child Assistance Program Quilt

PCAP quilt

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.

APCAPC

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.

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Learn more about the Alberta PCAP programs here.

For more on the Parent-Child Assistance Program in Canada, see earlier posts:

 

First Nations Women’s Healing: Moving from Hardship to Resilience Photo-essay

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This photo-essay is part of The Women’s Health Research Project on FASD Prevention in First Nations Communities conducted by the Canada FASD Research Network.

The project involved 37 First Nations Women from four different communities: Piikani Nation (Alberta), Sandy Bay Nation (Manitoba), St. Mary’s First Nation (New Brunswick) and Woodstock First Nation (New Brunswick).

Photovoice is a research approach that uses photography as a tool to move towards meaningful and respectful dialogue. Women participating in the project were asked to explore the question “What does health and healing look like for you in your community?” as an entry to discussion about issues such as substance use, pregnancy, FASD, and overall health.

The photo-essay explores how health and healing for many First Nations women is based on relationships – with land, with family and friends, with community, and with culture. Preventing FASD requires attention to creating and rebuilding these relationships.

View the photo-essay here. Learn more about the Canada FASD Research Network here.

Learn more about a related project in Canada’s Northwest Territories in an earlier post: Brightening Our Home Fires: An FASD Prevention and Women’s Health Project in Canada’s Northwest Territories (May 6, 2013).

Read more about Photovoice as a research method in FASD prevention in the journal article “An exploratory study on the use of Photovoice as a method for approaching FASD prevention in the Northwest Territories” published in The First Peoples Child and Family Review here (open access).

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Economic Evaluation of the Parent–Child Assistance Program in Alberta, Canada

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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:

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.

 

 

 

World Health Organization releases the first evidence-based global guidelines to prevent and treat substance use by pregnant women

Pages from WHO report-2

The World Health Organization recently released Guidelines for identification and management of substance use and substance use disorders in pregnancy.

These guidelines were primarily written for health-care providers managing women from conception to birth, and during the postnatal period, and their infants.

The guidelines focus on six areas:

  1. Screening and brief intervention
  2. Psychosocial interventions
  3. Detoxification
  4. Dependence management
  5. Infant feeding
  6. Management of infant withdrawal

Download the Guidelines from the WHO website.

BC Healthy Connections Project

Five-year Randomized Control Trial of the Nurse-Family Partnership (NFP) Program set to begin in British Columbia

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Nurse-Family Partnership  is a primary prevention program that was developed by Dr. David Olds in the United States with the goal of helping vulnerable young first-time mothers and their children.

The program involves public health nurses  visiting mothers in their homes, providing intensive supports starting in pregnancy and continuing until children reach their second birthday. Studies in the US have shown that NFP significantly reduces child maltreatment and child behaviour problems, while also improving children’s early learning and mother’s economic self-sufficiency. Economic studies have also shown that the program pays for itself over the long-term.

The government of  British Columbia is introducing the Nurse-Family Partnership program as part of its Healthy Families BC initiative. However, because the program has never been evaluated in the Canadian context, a five year randomized control trial will be an important first step. Compared with Canada, the United States has greater socioeconomic inequalities and fewer baseline health and social services. It’s possible that the program may not be more effective than existing services.

Using randomized-controlled trial methods, the program will be evaluated in comparison with existing perinatal services in BC regarding outcomes across three fundamental domains: 1) pregnancy and birth; 2) child health and development; and 3) maternal health and life course. Tobacco and alcohol use during pregnancy will be one of the key outcome measures. (Reductions in prenatal tobacco use have been reported in the US context but prenatal alcohol use is still an unknown.

Some of the project collaborators include: Simon Fraser University, McMaster University, BC Ministry of Health and BC Ministry of Children and Family Development. Learn more about the initiative here.

For more on home visiting programs, see earlier posts:

Free Webinar: Evaluating FASD Prevention and Support Programs – Feb 25, 2014

FLYER FASD Evaluation Webinar

The BC Centre of Excellence for Women’s Health in partnership with Nota Bene Consulting Group is presenting a webinar to introduce FASD-related program evaluation materials and to launch the project’s website:  www.fasd-evaluation.ca

Evaluating FASD Prevention and Support Programs: Tools to support program evaluation and planning of FASD prevention and support programs, and FASD programs in Aboriginal communities

Tuesday February 25, 2014, 9:00 – 10:00 am Pacific

The website and materials were created as part of a three-year project, which has aimed to:

  • Create common evaluation frameworks and identify promising methods and tools for FASD programs; and
  • Support the capacity of community-based organizations to undertake evaluation.

The project website (www.fasd-evaluation.ca) includes practical information, tools and resources on:

  • Program philosophy and approaches, such as trauma-informed and FASD-informed approaches
  • Program, participant and community outcomes
  • Indicators of outcomes
  • Measurement tools and resources

Join in the webinar to learn more about these resources and related tools, and how they can be used to assist program evaluation and planning. Web instructions will be provided upon completion of online registration at: http://fluidsurveys.com/s/Evaluating-FASD-Prevention-and-Support-Programs-Reg-Feb25/

First Peoples Child & Family Review journal: Special Issue on FASD

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The First Peoples Child & Family Review is a Canadian journal dedicated to interdisciplinary research honouring the voices, perspectives and knowledges of First Peoples through research, critical analyses, stories, standpoints and media reviews.

The Fall 2013 issue focuses specifically on FASD. Dorothy Badry and Tara Hanson describe the importance of this focus in the introduction:

“This special edition of The First Peoples Child & Family Review explores the social issue of Fetal Alcohol Spectrum Disorder (FASD) from the perspectives, experiences and needs of Aboriginal peoples. It recognizes that the context of FASD in Aboriginal communities is unique, and cannot be properly acknowledged or addressed through generalized studies and services.

As the articles in this edition illustrate, the issue and experience of Aboriginal peoples and FASD must be understood within the context of colonization and its intergenerational impacts. Without this critical lens, research findings and service recommendations may be inappropriate to Aboriginal families or communities. Mainstream programs developed from a Euro-Western perspective may conflict with Aboriginal worldviews.

The articles in this edition portray the human experience of struggles with alcohol, the role of history and trauma in adverse life outcomes as well as the existence of socioeconomic disparities. Experiences with child welfare and legal systems are chronicled, disruptions, difficulties and repercussive impacts of secondary disabilities. Along with the adversities, however, are powerful themes of hope, healing, promising practices, capabilities, and strength found through caring relationships.” (p. 5)

Several articles focus on FASD prevention and tackle topics such as developing community programs for pregnant and early parenting women who use alcohol and other substances that operate from an Indigenous knowledge framework, FASD prevention with women who have FASD themselves, and insights from workers in a home visitation program for women with a history of alcohol and drug abuse.

Many people continue to mistakenly believe that FASD is primarily an Indigenous issue (this is definitely not the case – FASD is an issue wherever women drink alcohol during pregnancy). It is true, though, that many Indigenous communities have been working to address FASD and related social concerns for longer than many non-Indigenous communities – this special issue highlights some of the leadership and innovation that many communities have taken in the past few years.

View the table of contents and download free full-text for all the articles here.