Best Practices : Fetal Alcohol Syndrome/Fetal Alcohol Effects and the Effects of Other Substance Use During Pregnancy
The authors wish to express sincere thanks to Nancy Poole for contributing significantly to the tertiary prevention section of this review. Thanks are also extended to Karen Palmer for managing the literature search and bibliography, and to Fabi Jenkins, Tim Blunt and Karen Giletta for assisting with the research. The support of Virginia Carver of Health Canada throughout the project was greatly appreciated. Finally, thanks are due to the project steering committee members for their ongoing support and guidance.
Section I: Project Background and Description
1. Introduction
Alcohol and other substance use during pregnancy is a problem inseparable from many other issues and factors in the lives of mothers, children, their families and communities. Although Fetal Alcohol Syndrome (FAS), Fetal Alcohol Effects (FAE) and the effects from other substance use during pregnancy are preventable, solutions are complex and must be viewed from a broad-based context that requires commitment and long-term planning on the part of many (Health Canada, 1996).
The effects from alcohol use during pregnancy vary with the timing, amount and duration of alcohol consumption, the general health of the mother and the resources available. Epidemiological research into FAS/FAE is incomplete, but the associated human and economic costs are significant and lifelong, as it is a leading cause of mental disability and preventable birth defects.
The effects of other substance use during pregnancy are less well understood but thought nonetheless to be significant. These effects also vary with the manner of use, and the health and social circumstances of the mother.
In the spring of 1999, the Canadian Centre on Substance Abuse (CCSA) undertook the best practices project on fetal alcohol syndrome/fetal alcohol effects and substance use during pregnancy for Health Canada. This project was supported by a national steering committee and involved two main elements: 1) the articulation of best practices based on a literature review and 2) a situational analysis of FAS-related activity across Canada.
This literature review will identify best practices for the prevention, identification, and intervention of FAS/FAE, and the effects of other substance use during pregnancy. The specific substances other than alcohol addressed in this review are cannabis, opiates, stimulants (including cocaine), and inhalants. The review follows a life-span approach and examines the needs of different population groups.
There is considerable scientific literature on the effects of alcohol and other substances during pregnancy. Although most of the literature on this issue originates in the United States, considerable attention has been given to Canadian studies. Emphasis has been given to practice-based studies that use experimental and quasi-experimental study designs. Where there is little evidence-based practice literature (e.g., interventions for adolescents and adults with FAS and related effects), reviews, consensus panel reports, and discussions and personal communications with experts have been used.
Epidemiological literature has been used to a lesser extent. As well, the literature concerning underlying mechanisms by which alcohol and other substances affect the developing fetus was beyond the scope of this review.
The CANBASE and CCSADOCS databases of the Canadian Centre on Substance Abuse (CCSA) were searched, particularly for Canadian published literature (French and English). MEDLINE, ETOH, Toxibase, and ERIC were searched for international published literature. Members of the steering committee also identified for inclusion relevant literature. Ultimately, over 500 articles were reviewed.
“Best practice statements” may be based on scientific evidence and/or on the perspectives of consumers, expert practitioners and educators.
The discussion and best practice statements in this project were based primarily on a review of the scientific literature. The report distinguishes between “some”, “moderate” and “good” levels of evidence using the following criteria:
Some evidence:
- 2 or more case studies or evaluations without control or comparison groups, or
- 1 quasi-experimental study (i.e., non-random comparison group)
Moderate evidence:
- 2 or more quasi-experimental studies, or
- 1 controlled study (i.e., random control group)
Good evidence:
- 2 or more controlled studies
However, many aspects of FAS/FAE and other substance use have not been empirically tested. The reasons for this include the fact that a fully experimental study design calls for a portion of a sample to receive no intervention, which presents important ethical concerns. In addition, when measuring the impact of an intervention, it is difficult to control for various confounding factors, such as family functioning, which may have significant impact. Consequently, where there was a lack of empirically tested evidence, best practice statements are based on other forms of evidence, including the perspectives of consumers, expert practitioners, educators, the steering committee, and other stakeholders. Where best practice statements relied on the views of stakeholders, rather than on scientific evidence, it is clearly stated.
The following key definitions refer to the various points in the development of FAS/FAE (from prior to the development of FAS/FAE, to identifying FAS/FAE and finally dealing with its consequences).
Prevention activities address issues up to the birth of the child and are intended to promote health, prevent alcohol and other drug use during pregnancy, prevent conception while substances are used, or reduce the harm arising from substance use during pregnancy.
Primary prevention activities are undertaken with a healthy population to maintain or enhance physical and/or emotional health. Such activities focus on individual behaviour change, systems or environments. Examples of primary prevention activities include raising public awareness, community education and alcohol control measures.
Secondary prevention activities aim to address a problem before it becomes severe or persistent. Examples of secondary prevention activities include outreach, screening and referral for women who are pregnant, or of child-bearing age, and using substances.
Tertiary prevention activities are for individuals in whom the condition has already developed. Activities include providing substance abuse treatment or birth control services for women who are at-risk of having a child affected by prenatal substance use, or women who have already given birth to a FAS/FAE or other substance use affected child.
Identification activities involve screening, referral and diagnosis of newborns, children, adolescents or adults affected by prenatal substance use. Screening may occur within a variety of settings such as social and health care, legal, educational or vocational. Diagnosis is carried out by medical specialists in conjunction with multidisciplinary teams. Assessment may occur prior to or following diagnosis and in either case, elaborates on the person’s abilities and attributes beyond that provided by the diagnosis.
Intervention activities are intended to prevent or reduce the harm associated with primary and secondary disabilities. These activities are directed to individuals with FAS/FAE or other drug effects, including infants, children, adolescents, and adults. Examples of such activities include strategies for improving management of the child, parenting, family support, or special interventions with respect to schools, vocational training, young offender or criminal justice settings.
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