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FASD Annotated Bibliography, Part 2

2015-12-Life-of-Pix-free-stock-photos-city-distributors-newspapers-AlexisDoyenIt seems more attention is being brought to preconception health and its role in FASD prevention.  We have known about the value of preconception intervention for many years. The Project CHOICES Research Group described positive intervention results using Motivational Interviewing in 2003 [1]. Yet now attention to the preconception period seems to be “trending.”

Preconception intervention has been discussed all along (we were asking about it in a landmark study in the ‘90s[2]), but the recent actions like U.S. CDC recommendations and Yukon’s placement of pregnancy tests in bars are certainly highlighting preconception alcohol use and health behaviours. The current Annotated Bibliography of articles published on FASD prevention seems to bear this recent focus out:., there were a total of five articles on preconception efforts in the 2013 list; and in articles published in 2015, that number has doubled.

In the latest annotated list, Landeen et al. says that the “fetal origin of disease theory” provides the rationale for providing preconception interventions[3]. Johnson et al. describe the development and dissemination of the CHOICES model[4] and its successful adaptation in a variety of settings. Hanson et al. have written three articles that expand on the work they did adapting and implementing a CHOICES program with the Oglala Sioux Tribe in the U.S.[5-7]. Analyses by Hussein et al.[8], Mitra et al.[9] and Oza-Frank et al.[10] suggest that preconception interventions must be tailored if they are to be successful. McBride stresses the need for preconception counseling for men, as substance use during pregnancy is not solely a decision made by women or under their control [11].

Members of the pNAT are currently undertaking a review of the literature on preconception interventions and formulating recommendations for a national research agenda. They will present some of these recommendations at the research meeting in August at the University of Regina (See www.canfasd.ca for more info on this meeting).

In keeping with our understanding of multiple forms of evidence, we are interested in knowing what you are seeing and hearing about preconception interventions on alcohol. Has preconception intervention been a part of your practice for a while? Who is funded to provide it in your location? What has worked, and how has it worked, in your experience?

For further reading on preconception interventions, see earlier postings:

Alcohol and FASD: It’s not just about women, June 6, 2016
FASD Prevention needs to begin before pregnancy: Findings from the US National Survey on Family Growth, May 20, 2015
Global Trends in Unintended Pregnancy: Implications for FASD Prevention, October 13, 2014
Impact Evaluation of the Healthy, Empowered and Resilient (H.E.R.) Pregnancy Program in Edmonton, Alberta, February 7, 2014
FASD Prevention in Nova Scotia, April 25, 2013
The Sacred Journey – new resource for service providers who work with First Nations families, August 1, 2012
FASD Prevention in Russia, February 15, 2012
New book: Fetal Alcohol Spectrum Disorder: Management and Policy Perspectives of FASD, Jan 6, 2011


REFERENCES/SUGGESTED READING

  1. Reducing the risk of alcohol-exposed pregnancies: A study of a motivational intervention in community settings. Pediatrics, 2003. 111(Supplement 1): p. 1131-1135.
  2. Astley, S.J., et al., Fetal Alcohol Syndrome primary prevention through FAS Diagnosis II, A comprehensive profile of 80 birth mothers of children with FAS Alcohol and Alcoholism, 2000. 35(5): p. 509-519.
  3. Landeen, L.B., R. Bogue, and M. Schuneman, Preconception and prenatal care–useful tools for providers of women’s health. South Dakota Medicine: The Journal Of The South Dakota State Medical Association, 2015. Spec No: p. 36-43.
  4. Johnson, S.K., M.M. Velasquez, and K. von Sternberg, CHOICES: An empirically supported intervention for preventing alcohol-exposed pregnancy in community settings. Research on Social Work Practice, 2015. 25(4): p. 488-492.
  5. Hanson, J.D., K. Ingersoll, and S. Pourier, Development and implementation of choices group to reduce drinking, improve contraception, and prevent alcohol-exposed pregnancies in American Indian women. Journal of Substance Abuse Treatment, 2015.
  6. Hanson, J. and J. Jensen, Importance of Social Support in Preventing Alcohol-Exposed Pregnancies with American Indian Communities. Journal of Community Health, 2015. 40(1): p. 138-146 9p.
  7. Hanson, J.D. and S. Pourier, The Oglala Sioux Tribe CHOICES Program: Modifying an Existing Alcohol-Exposed Pregnancy Intervention for Use in an American Indian Community. International Journal Of Environmental Research And Public Health, 2015. 13(1).
  8. Hussein, N., J. Kai, and N. Qureshi, The effects of preconception interventions on improving reproductive health and pregnancy outcomes in primary care: A systematic review. The European Journal Of General Practice, 2015: p. 1-11.
  9. Mitra, M., et al., Disparities in adverse preconception risk factors between women with and without disabilities. Maternal and Child Health Journal, 2015.
  10. Oza-Frank, R., et al., Provision of specific preconception care messages and associated maternal health behaviors before and during pregnancy. American Journal of Obstetrics & Gynecology, 2015. 212(3): p. 372.e1-372.e8.
  11. McBride, N., Paternal involvement in alcohol exposure during pre-conception and pregnancy. Australian Nursing & Midwifery Journal, 2015. 22(10): p. 51-51.

 

Each year, researchers with the Prevention Network Action Team (pNAT) of CanFASD Research Network conduct an international literature review of academic articles published on FASD prevention. Rose Schmidt and Nancy Poole of BC Centre of Excellence for Women’s Health looked at articles published between January and December 2015 and compiled a comprehensive bibliography of 88 FASD prevention-related articles – an increase of 25 articles from last year. With this review, those working on FASD prevention will be able to update themselves on the most current evidence and tailor policy and practice accordingly.

The bulk of the articles have come from the U.S., Canada and Australia, the United Kingdom and South Africa, in that order. The articles are organized under the four-level prevention framework created by the pNAT, as well as including articles related to FASD prevalence, influences, issues of preconception, indigenous women and young women. Fourteen articles were assigned to more than one topic category.

A look at “prevalence”

The topic category with the most articles was prevalence, followed in order by brief intervention with girls and women of childbearing age (Level 2), and influences. Preconception, raising awareness (Level 1), and specialized prenatal report (Level 3) also had a significant number of articles. We will highlight these topics individually in this blog over time in order to focus on key components of FASD prevention.

There were 26 articles having to do with prevalence rates as compared to seven articles in that category in 2014. They relate to specific location, U.S., Canada, Uganda, Norway and Tanzania, for instance, as well as pregnancy intentions, characteristics of women at risk for alcohol-exposed pregnancy, women’s understanding of risk factors during pregnancy, rates of binge drinking, adverse childhood experiences, and use of both alcohol and tobacco during pregnancy.

Some of the more compelling findings include:

  • new data from Canada shows that 27% of pregnancies are unintended – useful in that previous data on unintended pregnancies has been from the U.S. only [1];
  • smoking currently or in the past increased the likelihood of consuming alcohol during pregnancy [2];
  • experiences of abuse and violence are associated with higher levels of drinking during pregnancy[3], as well as higher education levels and older maternal age [4-9];
  • a “dose response” relationship was found to exist between adverse childhood experiences and drinking during pregnancy[3], and;
  • smoking during pregnancy was the most consistent predictor of drinking during pregnancy[10] .

Preconception behaviors as they relate to prevalence of alcohol-exposed pregnancies, in general, has become more of a focus in prevention efforts, and will be further discussed in upcoming blog posts on this bibliography.

For more information on FASD Prevention and Prevalence, see these earlier posts:


REFERENCES
  1. Oulman, E., et al., Prevalence and predictors of unintended pregnancy among women: an analysis of the Canadian Maternity Experiences Survey. BMC Pregnancy & Childbirth, 2015. 15: p. 1-8.
  2. Lange, S., et al., Alcohol use, smoking and their co-occurrence during pregnancy among Canadian women, 2003 to 2011/12. Addictive Behaviors, 2015. 50: p. 102-109.
  3. Frankenberger, D.J., K. Clements-Nolle, and W. Yang, The association between adverse childhood experiences and alcohol use during pregnancy in a representative sample of adult women. Women’s Health Issues, 2015. 25(6): p. 688-695.
  4. English, L., et al., Prevalence of Ethanol Use Among Pregnant Women in Southwestern Uganda. Journal Of Obstetrics And Gynaecology Canada: JOGC = Journal D’obstétrique Et Gynécologie Du Canada: JOGC, 2015. 37(10): p. 901-902.
  5. González-Mesa, E., et al., High levels of alcohol consumption in pregnant women from a touristic area of Southern Spain. Journal of Obstetrics & Gynaecology, 2015. 35(8): p. 821-824.
  6. Dunney, C., K. Muldoon, and D.J. Murphy, Alcohol consumption in pregnancy and its implications for breastfeeding. British Journal of Midwifery, 2015. 23(2): p. 126-134.
  7. Kingsbury, A.M., et al., Women’s frequency of alcohol consumption prior to pregnancy and at their pregnancy-booking visit 2001–2006: A cohort study. Women & Birth, 2015. 28(2): p. 160-165 6p.
  8. Kitsantas, P., K.F. Gaffney, and H. Wu, Identifying high-risk subgroups for alcohol consumption among younger and older pregnant women. Journal of Perinatal Medicine, 2015. 43(1): p. 43-52 10p.
  9. Lanting, C.I., et al., Prevalence and pattern of alcohol consumption during pregnancy in the Netherlands. BMC Public Health, 2015. 15(1): p. 1-5.
  10. O’Keeffe, L.M., et al., Prevalence and predictors of alcohol use during pregnancy: findings from international multicentre cohort studies. BMJ Open, 2015. 5(7): p. e006323-e006323.

 

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

plan

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.”

HealthPro_Page_1

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.

resizedimage300138-pregnancy-logo

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:

Cover Mother-Child-Study_Report_2014

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.

fact sheet 9

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.

PCAPQuilt_detail_w635_h300_opt

Learn more about the Alberta PCAP programs here.

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

 

cover

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).

FPCFR

 

 

 

stockvault-mother-and-daughter116584

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.

 

 

 

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.

Overview: Four Levels of FASD Prevention

Information Sheet: What Men Can Do To Prevent FASD

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