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FACE Research Roundtable
International FAS Day
September 9, 2002
Setting a Women-Centered Agenda
for Research on FAS Prevention
and Women’s Health
Nancy Poole
Research Consultant on Women and Substance Use Issues
BC Women’s Hospital
and
BC Centre of Excellence for Women’s Health
This presentation will focus on discussions which took place in
Vancouver May 5-7, 2002
at a workshop hosted by the
British Columbia Centre of Excellence for Women’s Health
and funded by the Institute of Gender and Health, CIHR
entitled
Fetal Alcohol Syndrome and Women’s Health:
Setting a Women-Centred Research Agenda
The May 2002 Workshop built on the
Best Practices and Situational Analysis Research
led by the Canadian Centre on Substance Abuse
published by Health Canada, 2001
Primary
Prevention
• Bringing a womencentered approach to
broad, publicly focused
FAS prevention and
health promotion
strategies
Tertiary
Prevention
• Bringing women-centered
approach to FAS
prevention strategies
focused on pregnant
substance using women
and their support systems
And in addition focused on . . .
Secondary
Prevention
• Bringing womencentered approach to
FAS prevention
strategies focused on
women of child-bearing
years and their support
systems
• Understanding the scope and nature
of women’s substance use in
pregnancy
• Consideration of the lens brought to
bear on Aboriginal women
• Mothering and substance use policy
and practice
• Ethical issues
Understanding the Nature and Scope of
Women’s Substance Use During Pregnancy
Participants voiced concern about:

the lack of Canadian data on girls’ and women’s use and misuse of
substances in general, including substance use when pregnant/mothering

the limited substantive information concerning assessment of risk in
relation to dose-effects or threshold level where alcohol and other
substances become harmful during pregnancy

the need to determine how to measure the prevalence and incidence rates
of substance use during pregnancy, and the spectrum of birth defects and
disabilities associated with prenatal exposure to alcohol in Canada
Another recurrent theme arising from workshop discussions was the need to
fully understand pregnant and mothering women’s qualitative experiences with
substance use and misuse, including the influence of socio-environmental
variables.
A view of factors contributing to FAS that ground a broad
research agenda relating to women’s health
Exposure to
Violence
Poverty
Mother’s
use of
other drugs
Mother’s
nutrition
Policy on
Mothering
Mother’s
access to
prenatal
care
Racial
Discrimination
Mother’s
Alcohol
Use
Resilience
Mother’s
overall
health
Genetics
Mother’s
stress level
Context/Isolation
Age
Experience of Loss
Primary
Prevention
Primary Prevention and Health Promotion
Key research questions generated in the workshop focused
both on making FAS-specific prevention efforts more
effective, and understanding the broader efforts needed to
change the conditions of women’s lives that more
fundamentally prevents substance use and related health
problems.
Primary
Prevention
Primary Prevention and Health Promotion –
Some Research Questions
How do women and girls respond to public media messages and
policy?
How can we support understanding on the part of girls and women of
childbearing age, of the concept of risk as it relates to substance use?
What needs to be involved in public health messages and policies to
minimize barriers (e.g. guilt, fear of accessing needed service in the
event that their children are apprehended) for women?
What combination of strategies (e.g., individual messages,
community awareness activities, supportive services, supportive
policy and community health promotion activities) will be effective in
preventing/reducing substance use problems in women, and
substance use in pregnancy specifically?
What strategies would be most effective in shifting the negative
perception of substance-using pregnant/mothering women held by
practitioners and the public?
Secondary
Prevention
Secondary Prevention
Secondary
prevention of FAS
is about reaching
substance-using
women of child
bearing years
through a broad
infrastructure of
services
Often it involves
screening for
substance use by
women of child bearing
years and pregnant
women, and brief
motivational
interventions by a
clinicians in a range of
health and social
services.
Community Environment
Housing
Education and
Employment
Violence
and other
Women’s Services
Pregnancy
Outreach Programs
Social/Income
Assistance
Mental
Health
Physical Health
Acute Care
Community Care
Health Promotion
Aboriginal
Women’s A&D
Services
Treatment
Programs
Corrections/
Criminal Justice
Children’s Leisure and other
Law
community-based
Services
Enforcement
services
Child Welfare
Spiritual &
Mutual Aid
Communities
An effective screening tool used in USA- The 5 “P”s
1.
Did any of your Parents have a problem with drug or
alcohol use?
2.
Do any of your friends (Peers) have a problem with drug or
alcohol use?
3.
Does your Partner have a problem with drug or alcohol use?
4.
In the month before you were pregnant (Past) how many
times did you drink alcohol?
None____ Rarely____ Infrequently____ Frequently____
5.
How much are you currently drinking (Present)?
None____ Rarely____ Infrequently____ Frequently____
Institute for Health and Recovery
Secondary
Prevention
Secondary Prevention
Participants stressed their concerns with current practices related to
screening and assessment, and the trend towards using technologybased versus relational approaches.
Concerns regarding the screening of women at risk (i.e., women of
childbearing age, pregnant women, mothering women) were also
raised. Some research questions identified in this area included:
 In the current context where universal screening is not implemented, who is being
targeted for screening? Specifically in what ways are Aboriginal people over
represented in those being screened for substance use in pregnancy and in those
seen as affected by FAS and related disabilities. What is the impact of this on the
health of Aboriginal women and their children?
 How might provider attitudes, to women who use alcohol and drugs, and to the use
of screening questionnaires in pregnancy be best influenced?
 How can we frame screening questions so that the health of the mother-child dyad
is stressed and the threat of apprehension is minimized?
Secondary
Prevention
Secondary Prevention
In the absence of other risk factors, there was little evidence
of associations between:
prenatal exposure to moderate alcohol use or risk level (as
measured by T-ACE scores)
and
lower academic ability scores, lower health rating or with
any behavioural problems
Anne George, Ph.d Dissertation UBC July 2001
British Columbia population-based study following 8 year old children of mothers pregnant on
Vancouver Island during 1 year period, 1990-1991
Secondary
Prevention
Secondary Prevention
Participants stressed the importance of involving women
at risk (i.e. pregnant women, substance-using women, mothers)
in the planning, design, and implementation of research,
programs, and services. Among the questions raised in
this area were the following:
 How do pregnant women who drink alcohol estimate the risk
to their fetus?
 What do women of child-bearing age think about alcohol
consumption and FAS in pregnancy?
 How would women of child-bearing age like to be screened for
substance use problems?
 How do we involve women in designing and delivering all
levels of care?
Tertiary
Prevention
Tertiary Prevention
Research to guide work on tertiary prevention
Barriers to Treatment Cited by Pregnant and Parenting Women
when first accessing support/treatment
• Shame (66%)
Can involve
specialized
outreach to, and
care of, high risk
women and
their families as well as
building of
strong perinatal
service
networks that
support
comprehensive
and
collaborative
care.
• Fear of losing children (62%)
• Fear of prejudicial treatment on the basis of their motherhood
status (60%)
• Feelings of depression and low self esteem (60%)
• Belief they could handle the problem without treatment (55%)
• Lack of information about what treatment was available (55%)
• Waiting lists for treatment services (53%)
Source: Apprehensions: Barriers to Treatment for Substance Using Mothers, BC Centre of Excellence for Women’s
Health (2001) Researchers: Nancy Poole and Barbara Isaac
n=47
Tertiary
Prevention
Sheway Project
Services
Support to build networks both friendship and
ongoing service support
networks
Pre and postnatal
Healthy Babies,
Medical Care and
Drop In
Infant/Child Development
Nursing Services
Out Reach
Nutritional Support
and Services
Support/ Counselling on
Substance Use/Misuse
issues
Advocacy and Support
on Access, Custody and
other Legal issues
Crisis Intervention
Advocacy
Support
Connecting with
other services
Support on HIV,
Hepatitis C and
STD issues
Advocacy and Support
on Housing & Parenting
issues
Support in reducing
exposure to violence and
building supportive
relationships
Reducing barriers to care
Tertiary
Prevention
Tertiary Prevention
Many research questions were generated relating to tertiary
prevention, including:
 How can we integrate interventions that take into consideration
history of trauma, substance use, and mental health?
 How can we integrate the service needs of both substance-using
pregnant/mothering women and the fetus/child?
 How do we reduce barriers to substance use treatment for women
and girls and support them to stay in treatment once they get there?
 What are the best practices regarding harm reduction as an approach
when working with women of childbearing age, pregnant women, and
mothering women?
 What are some effective strategies for involving partners in tertiary
prevention efforts?
 How do we integrate understanding of tobacco as a problem drug and
provide integrated intervention
Tertiary
Prevention
Integrated Service Delivery Model
for people who are or were teenage prostitutes
developed by the PEERS program in Victoria BC
Reintegration (they have now broken the cycle)
Healing (long term planning begins)
Stabilization (short term services
Crisis Intervention
Harm Reduction (emergency services during active involvement)
Physical Health
Mental Health
and Healing
Survival Needs
Food, Clothing
and Shelter
Prostitutes Empowerment, Education and Recovery Society “Creating an Atmosphere of Hope for All Children and Youth: Teen Pros titutes
Speak Up and Out” an unpublished report prepared for the Ministry of Women’s Equality, April 1997
Tertiary
Prevention
Mothering and Substance Use
Participants spoke to the importance of directly addressing the very
real barriers experienced by pregnant women and mothers to
identifying their needs, and the strong need for collaboration with the
child welfare system if these barriers are to be eliminated.
Discussion took place on the needed changes to substance use,
health and other social services to make them welcoming and
supportive of the mothering role.
Research questions such as the following were generated:
 How do we meet the needs of women using substances in their roles as
mothers?
 How do we balance/integrate our service response to substance-using
mothers and their children?
 How can drug use be compatible (or not compatible) with adequate child
care? Under what circumstances can a woman’s substance use be
compatible with adequate child care?
 What resources and/or supports in a woman’s life will enable both
substance use and adequate child care?
• Involves women and their health
care providers in an interactive
process defined by mutual respect
and collaboration
• Recognizes that women have
authority on their own lives
• Involves the empowerment of
women, to be informed participants
in their own health care, with the
right to control their own bodies
Recognises the impact of :
• Supports women learning from,
and with, each other
• geography, financial and informational
constraints
• age, sexual orientation, culture, language,
disability
Empowering
Participatory
• social, economic, environmental and other
living conditions of women’s lives
Respectful of Diversity
Social Justice Focus
• Encourages full participation by
women in health service and program
planning, implementation, evaluation,
policy and research
• supports the involvement of service
providers and all women in advocating
for women’s achievement of political,
cultural, social and economic equality
Safe
Women
centred
care
• Establishes emotionally, spiritually,
culturally and physically safe
environments
• Incorporates approaches that
actively take into consideration the
likelihood of women’s experience of
violence
Individualized
• Takes into consideration health
concerns unique to each woman
and her personal experiences
including her experience of
violence, her role(s) as
homemaker, worker, and
caregiver
Holistic
Comprehensive
• Supports increased collaboration and partnering
across health sectors, disciplines and professions
• Supports use of alternative and complementary
therapies
• Involves comprehensive care, including health
promotion, education prevention, treatments and
rehabilitation
• Applies knowledge of bio-psychosocial-spiritual factors in provision
of comprehensive care,
• Avoids unnecessary medicalization
of natural life changes related to
reproduction, menopause and
child birth
Copyright © 1997 British Columbia Centre of Excellence for Women’s Health
Women
Centred
Care
Women Centred Care
Issues surrounding how to define, implement, measure, and evaluate
“women-centred” care, programs, and services were raised. Further,
participants felt it is important to demonstrate how a women-centred
approach directly benefits women at risk.
 How “women-centred” are existing FAS/FAE programs, services,
and educational videos?
 What are culturally appropriate models of care for Aboriginal women
and are they compatible with a women-centred approach?
 What is a women-centred approach to delivering a diagnosis of FAS
and the spectrum of other birth defects and disabilities associated
with prenatal exposure to alcohol?
 Do women-centred practices lead to better treatment outcomes for
women compared to traditional practices?
Women
Centred
Care
Policy Directions
Workshop participants felt it that it is crucial to identify, compare, and
contrast policies relevant to the field of FAS initiated by the provincial
government, the federal government, and the international community.
Additionally, ethical and practical complexities arising from policies
targeted at substance-using pregnant women were raised in a number of
presentations.
Key research questions arising from these presentations and
discussions included the following:
 What is the impact of the different approaches in each province? Are there any
provinces where the ministries are working well together?
 What are some beneficial FAS policies in other countries (e.g. USA and UK) and
can they be integrated into Canadian FAS policy?
 What would be an effective public health strategy to outline the dangers
associated with informal diagnosis, and the importance of seeking medical
confirmation about an FAS diagnosis?
 Does surveillance contribute to our knowledge and/or how does it become
intrusive and discriminatory?
 How can FAS programming and policy be conceptualized as being both womenand child-centred rather than a dichotomy?