1. 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

2. 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

3. 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 Bringing a women- centered approach to broad, publicly focused FAS prevention and health promotion strategies Primary Prevention Tertiary Prevention Bringing women-centered approach to FAS prevention strategies focused on pregnant substance using women 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 And in addition focused on... Secondary Prevention Bringing women- centered approach to FAS prevention strategies focused on women of child-bearing years and their support systems

4. 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.

5. Mother’s Alcohol Use Mother’s nutrition Mother’s stress level Mother’s access to prenatal care Mother’s use of other drugs Mother’s overall health Poverty Racial Discrimination Age Context/Isolation Experience of Loss Policy on Mothering Resilience Exposure to Violence Genetics A view of factors contributing to FAS that ground a broad research agenda relating to women’s health

6. Primary Prevention and Health Promotion Primary Prevention 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.

7. 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? Primary Prevention and Health Promotion – Some Research Questions Primary Prevention

8. Secondary prevention of FAS is about reaching substance-using women of child bearing years through a broad infrastructure of services Education and Physical Health Acute Care Community Care Housing Aboriginal Services Law Enforcement Social/Income Assistance Children’s Services Child Welfare Employment Violence and other Women’s Services Spiritual & Mutual Aid Communities Health Promotion Community Environment Corrections/ Criminal Justice Leisure and other community-based services Pregnancy Outreach Programs Women’s A&D Treatment Programs Mental Health Secondary Prevention 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. Secondary Prevention

9. An effective screening tool used in USA- The 5 “P”s P 1.Did any of your Parents have a problem with drug or alcohol use? P 2.Do any of your friends (Peers) have a problem with drug or alcohol use? P 3.Does your Partner have a problem with drug or alcohol use? P 4.In the month before you were pregnant (Past) how many times did you drink alcohol? None____ Rarely____ Infrequently____ Frequently____ P 5.How much are you currently drinking (Present)? None____ Rarely____ Infrequently____ Frequently____ Institute for Health and Recovery

10. Secondary Prevention Secondary Prevention Participants stressed their concerns with current practices related to screening and assessment, and the trend towards using technology- based 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?

11. 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

12.  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? 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: Secondary Prevention Secondary Prevention

13. Barriers to Treatment Cited by Pregnant and Parenting Women when first accessing support/treatment n=47 Source: Apprehensions: Barriers to Treatment for Substance Using Mothers, BC Centre of Excellence for Women’s Health (2001) Researchers: Nancy Poole and Barbara Isaac Shame (66%) 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%) Research to guide work on tertiary prevention 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. Tertiary Prevention Tertiary Prevention

14. Services Sheway Project Nutritional Support and Services Advocacy and Support on Access, Custody and other Legal issues Support/ Counselling on Substance Use/Misuse issues Advocacy and Support on Housing & Parenting issues Support to build networks - both friendship and ongoing service support networks Healthy Babies, Infant/Child Development Support in reducing exposure to violence and building supportive relationships Support on HIV, Hepatitis C and STD issues Pre and postnatal Medical Care and Nursing Services Drop In Out Reach Crisis Intervention Advocacy Support Connecting with other services Reducing barriers to care Tertiary Prevention

15.  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 Tertiary Prevention Many research questions were generated relating to tertiary prevention, including:

16. Physical Health Mental Health and Healing Survival Needs Food, Clothing and Shelter Harm Reduction ( emergency services during active involvement) Stabilization (short term services Crisis Intervention Healing (long term planning begins ) Reintegration ( they have now broken the cycle ) Integrated Service Delivery Model for people who are or were teenage prostitutes developed by the PEERS program in Victoria BC Prostitutes Empowerment, Education and Recovery Society “Creating an Atmosphere of Hope for All Children and Youth: Teen Prostitutes Speak Up and Out” an unpublished report prepared for the Ministry of Women’s Equality, April 1997 Tertiary Prevention

17. 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? Tertiary Prevention Mothering and Substance Use

18. Women centred care 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 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 Supports women learning from, and with, each other 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 Applies knowledge of bio-psycho- social-spiritual factors in provision of comprehensive care, Avoids unnecessary medicalization of natural life changes related to reproduction, menopause and child birth Recognises the impact of : age, sexual orientation, culture, language, disability geography, financial and informational constraints social, economic, environmental and other living conditions of women’s lives 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 Holistic Participatory Empowering Individualized Respectful of Diversity Comprehensive Safe Establishes emotionally, spiritually, culturally and physically safe environments Incorporates approaches that actively take into consideration the likelihood of women’s experience of violence Social Justice Focus Copyright © 1997 British Columbia Centre of Excellence for Women’s Health

19.  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? 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. Women Centred Care Women Centred Care

20. 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 women- and child-centred rather than a dichotomy?