Fetal Alcohol Spectrum Disorder International Research and Practice Inventory: Focus on Prevention and Intervention Faculty of Social Work The University of Calgary Dorothy Badry, MSW, RSW Isabelle Chouinard, B.Sc., BSW September, 2003 Table of Contents 1. Executive Summary p.4 2. Research Activities – Prevention & Intervention of FASD p.6 2.1 University of Washington, Seattle 2.11 Research Emphasis Area on Fetal Alcohol Syndrome, Fetal Alcohol Syndrome Diagnostic & Prevention Network p. 7 p. 7 2.12 Fetal Alcohol and Drug Unit Department of Psychiatry and Behavioral Sciences University of Washington School of Medicine p. 10 National Center on Birth Defects and Developmental Disabilities (Centers for Disease Control and Prevention) 2.21 Prevention Activities 2.22 Education Activities 2.23 Tracking 2.24 Monitoring 2.25 Identification through biomarkers 2.26 Intervention Strategies p. 14 2.2 2.3 2.4 3. p. 14 p. 19 p. 22 p. 23 p. 27 p. 29 CSAP FAS Center for Excellence Grantee Program List of funded projects p. 31 FAS/ARBD Prevention: Research to Practice p. 35 Research Publications – Prevention & Intervention of FASD 3.1 Culturally Diverse Populations 3.2 Prevention/Intervention 3.3 Surveillance/Screening 3.4 Medical (Pertaining to Intervention) 3.5 Alcoholism and Pregnancy: Social Implications Related to Prevention Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory p. 36 p. 37 p. 41 p. 58 p. 63 p. 66 2 4. Programs – Prevention & Intervention of FASD 4.1 4.2 4.3 4.4 4.5 4.6 4.7 4.8 4.9 5. 6. 7. Partnership to Prevent Fetal Alcohol Syndrome Fetal Alcohol Education Program (FAEP) National Organization on Fetal Alcohol Syndrome (NOFAS) International Birth Defects Information System (IBIS) National Council on Alcohol and Drug Dependence Inc. (Juneau Affiliate) Statewide Fetal Alcohol Syndrome Prevention Program Colorado AHEC Program National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect Brief Alcohol Intervention: The Healthy Mom’s Project p. 71 p. 72 p. 74 p. 74 p. 75 p. 75 p. 76 p. 76 p. 77 p. 78 Funding Opportunities 5.1 Maternal Alcohol Use and Prenatal Alcohol Exposure Prevention/Intervention Initiative 5.2 March of Dimes p. 80 p. 81 FASD Family and Practitioner Resources 6.1 Fetal Alcohol Syndrome Family Resource Institute 6.2 Family Empowerment Network: Supporting Families Affected by FAS/E 6.3 FAS Community Resource Center 6.4 Educational Resources 6.5 Resources for Practitioners p. 83 p. 84 p. 84 International Activities and Online Resources p. 91 Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory p. 82 p. 85 p. 85 p. 90 3 1. Executive Summary A literature scan was undertaken to discover available research and resources outside of Canada in relation to Fetal Alcohol Spectrum Disorder. The primary focus of the search was in the areas of prevention and intervention. Much of the current literature emerges from the medical field. The notion that FASD is entirely preventable through abstention from alcohol during pregnancy is a common thread within the literature. The recognition of social issues such as alcoholism, poverty, oppressive social structures and systems that are distinctly related to the birth of children with FASD is not given a voice in the literature. There are underlying reasons why women drink during pregnancy and this requires further examination. Past and current research has tended to focus on the teratogenicity of alcohol and on observed disabilities in children exposed to alcohol during pregnancy. Recognition that best practices in prevention are lacking is the driving force behind some of the research projects currently under way. A review of the current literature in regards to research and activities towards prevention and intervention of FASD uncovered only a few publications. There are existing programs highlighted in this report that are currently being implemented and evaluated for success rates. Most research in this field tends to concentrate in the United States, whereas other countries appear to focus research efforts in the description of FASD and also in providing this information in support to families. Ann Streissguth, PhD, a noted researcher in the field of FASD refers to the 5 P’s of prevention: Public Education, Professional training, Public Policy, Programs and Services, and Parent and Citizen Activism. The current efforts as it appears in the literature tend to focus on public education and professional training. Although some projects are currently being conducted to address the need for programs and services as well as public policy, there is a critical gap in the number of prevention and intervention programs being developed and implemented. In particular, most programs tend to focus on educational aspects of prevention, and programs that are supportive in nature are few. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 4 As a source of information, the World Wide Web stands out as a primary source of knowledge regarding FASD. There are many credible organizations with websites that have done a great deal to promote solid education regarding FASD. However, it should be noted that information on the web should be scrutinized in terms of its claims of truth or knowledge regarding FASD. International sources that were found on the Internet promoted family advocacy and support and did not reveal information about ongoing research, and this is either due to lack of information, or information presented in another language. International links are documented within this report. Health related professions have been instrumental in promoting awareness regarding FASD and clinical medical research has been critical in developing an understanding of the complexities of this disability. There is a large body of literature which offers a focus on community activities, advocacy and support networks for individuals with FASD and their caregivers. The research on prevention primarily focuses on educating birth mothers and pregnant women on the dangers of alcohol consumption during pregnancy. A great deal has been invested on advertising campaigns that recommend women who are pregnant refrain from consuming alcohol. What appears to be lacking around FASD prevention is a broader focus on the socioeconomic structures which gives rise to alcoholism and substance abuse. Literature that focuses on intervention with women who are at risk of giving birth to children with FASD is limited. Many activities regarding prevention are community based and do not have a direct link to research that would examine the efficacy of their activities. In summary, the research on prevention and intervention is only at an early beginning stage. Most of the information found in this report refers to ongoing programs who are just starting to evaluate the quality of different interventions. The need for prevention has been thoroughly identified, while the scope and focus on actual prevention programs remains narrow. Within the scope of this search the great majority of activities are focused on prevention, while information on the actual interventions at different ages and stages is extremely limited. This suggests that a focus in future research should be directed towards implementation and evaluation of intervention programs. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 5 2. Research Activities – Prevention & Intervention of FASD Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 6 2.1 University of Washington, Seattle 2.11 Research Emphasis Area on Fetal Alcohol Syndrome http://depts.washington.edu/chdd/MRDDRC/REAs/FetalAlcoholREA.html, Fetal Alcohol Syndrome Diagnostic & Prevention Network http://depts.washington.edu/fasdpn/ Faculty investigators for the Research Emphasis Area on Fetal Alcohol Syndrome address four main problems within an interdisciplinary framework: First, they seek to develop and test screening and diagnostic tools for accurate and reproducible identification of the full spectrum of disorders associated with fetal alcohol exposure. Research efforts are focused on rigorously testing the performance of the tools (e.g., sensitivity, specificity, predictive value positive, construct validity, test-retest) in clinical and population-based samples. Research efforts are also focused on assessing the diagnostic utility of magnetic resonance imaging (MRI), spectroscopy (MRS), functional MRI (fMRI) and fetal ultrasound. Accurate diagnoses not only lead to more appropriate interventions, but also to more accurate estimates of prevalence over time for assessment of primary prevention efforts. Second, investigators are engaged in FASD prevention and intervention research using randomized control trial methodology. The prevention research seeks to assess the efficacy of paraprofessional advocacy programs targeted to high-risk women. Key goals are reduction in alcohol use and improved family planning. The intervention research seeks to assess the efficacy of behavioral consultation and social communication intervention programs targeted to children with FASD, their parents, and their teachers. Key goals are increased parent/teacher skills in meeting the needs of their children and improved child social communication skills. A third area of concentration is descriptive research that seeks to elucidate the lifelong cognitive/behavioral profile(s) of individuals with prenatal alcohol exposure. This research is instrumental in setting public health policy for meeting the lifelong needs of these individuals. A fourth area of concentration is the study of newborn cerebrovascular responses to maternal alcohol use. This research will further elucidate the pathogenesis of brain damage associated with prenatal alcohol use. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 7 Investigators with interests in prevention/intervention Faculty Investigators and Interest Areas Susan Astley, PhD Associate Professor of Epidemiology Research Affiliate, Center on Human Development and Disability Director, Fetal Alcohol Syndrome Diagnostic & Prevention Network Coordinator, Research Emphasis Area on Fetal Alcohol Syndrome astley@u.washington.edu 206-685-9665 University of Washington Box 357920 Seattle, WA 98195-7920 Astley's major research interests include developing effective tools for surveillance, screening and diagnosis of fetal alcohol syndrome (FAS). Her work also includes the design and implementation of randomized control trials for identification of effective interventions for individuals with specific conditions including FAS, cystic fibrosis and cerebral palsy. Therese M. Grant, PhD Research Assistant Professor, Psychiatry and Behavioral Sciences Principal Investigator, Parent-Child Assistance Program (P-CAP), Fetal Alcohol and Drug Unit Research Affiliate, Center on Human Development and Disability granttm@u.washington.edu 206-543-7155 University of Washington Box 359112 Seattle, WA 98195-9112 Dr. Grant holds a Ph.D. in epidemiology from the University of Washington. A research assistant professor of psychiatry and behavioral sciences, she is principal investigator of the Parent-Child Assistance Program, an intervention model working effectively with high-risk mothers who abuse alcohol and drugs during pregnancy. The program has been replicated at a dozen locations in the United States and Canada. Grant's research focuses on perinatal substance abuse and the effects of prenatal exposure to drugs and alcohol, fetal alcohol syndrome, development of assessment instruments and intervention strategies, as well as the challenges of community intervention and prevention with highrisk mothers and their children. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 8 Leslie Olswang, PhD Professor and Associate Chair, Speech and Hearing Sciences Research Affiliate, Center on Human Development and Disability lolswang@u.washington.edu 206-543-7974 University of Washington Box 354875 Seattle, WA 98195-4875 Olswang's research focuses on language disorders in children. She investigates the benefits of treatment for children with impairments in communication and is particularly interested in using treatment to uncover the processes underlying communication. She examines treatment efficacy in infants with cerebral palsy and in children with fetal alcohol syndrome. Ann Streissguth, PhD Professor of Psychiatry and Behavioral Sciences Director, Fetal Alcohol and Drug Unit Research Affiliate, Center on Human Development and Disability astreiss@u.washington.edu 206-543-7155 University of Washington Box 359112 Seattle, WA 98195-9112 For more than 25 years, fetal alcohol syndrome (FAS) has been recognized as an outcome of prenatal exposure to alcohol. Streissguth's research focuses on elucidating the longterm neuropsychological consequences of prenatal alcohol exposure. Streissguth and her colleagues at the Fetal Alcohol & Drug Unit have demonstrated a broad array of attentional, memory, learning and neurobehavioral effects of prenatal alcohol exposure from birth to adulthood, and are now investigating the neuroanatomic correlates of these dysfunctional behaviors. With colleagues at the Fetal Alcohol and Drug Unit, she has developed and demonstrated effective strategies for preventing effects of prenatal exposure to alcohol and drugs, including an ongoing program that provides three years of paraprofessional advocacy for mothers abusing alcohol and drugs during pregnancy and getting little or no prenatal care. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 9 2.12 Fetal Alcohol and Drug Unit Department of Psychiatry and Behavioral Sciences University of Washington School of Medicine http://depts.washington.edu/fadu/ The Fetal Alcohol and Drug Unit is a research unit dedicated to the prevention, intervention and treatment of Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE). Their main goals are to conduct research on fetal alcohol and drug effects across the life span, to disseminate information on fetal alcohol and drug effects, to provide consultation for persons of any age thought to be affected by prenatal exposure to alcohol, and to provide training in human behavioral teratology. Over the past twenty-eight years, their work has focused on research to identify and examine the effects of prenatal alcohol and drug exposure across the life span, with particular emphasis on FAS and FAE, and on interventions with high-risk mothers who abuse alcohol and drugs. Their focus includes prevention and intervention projects on an individual and community basis and multidisciplinary population-based and clinical follow-up studies. The unit also provides staffing and curricula for workshops, invited lectures and conferences on FAS/FAE prevention and intervention at the regional, national and international level. Fetal Alcohol and Drug Unit Research projects: A) Prospective Longitudinal Study on Health and Pregnancy Funded by the National Institute on Alcohol Abuse & Alcoholism (NIAAA) This longitudinal prospective study evaluates the effects of alcohol, nicotine, drugs, and other prenatal factors that can affect children's health and development. The basic hypothesis for the study is that prenatal alcohol exposure exerts an enduring dosedependent influence on offspring health and development across the life span. This study has far-reaching public health implications. Alcohol remains the teratogenic drug most frequently ingested during pregnancy. Data from this study led to an estimated incidence rate of Fetal Alcohol Syndrome (FAS) and Alcohol Related Neurobehavioral Disorder (ARND) combined of nearly 1 per 100 births. Recent work has demonstrated that prenatal exposure to alcohol is significantly associated with alcohol problems in young adults. Unfortunately, alcohol-affected infants, children and adults are often denied needed services when they lack the characteristic FAS face and/or mental retardation as defined by a standardized IQ score of less than 70. It is essential that the long-term adult consequences of these birth defects be understood and that markers of clinically affected individuals be identified to support appropriate diagnosis and intervention. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 10 Selected Publications Barr, H.M. & Streissguth, A.P. (2001). Identifying maternal self-reported alcohol use associated with fetal alcohol spectrum disorders. Alcoholism: Clinical & Experimental Research, 25(2), 283-287. Baer, J.S., Barr, H.M., Bookstein, F.L., Sampson, P.D., & Streissguth, A.P. (1998). Prenatal alcohol exposure and family history of alcoholism in the etiology of adolescent alcohol problems. Journal on Studies on Alcohol, 59, 553-543. Carmichael Olson, H., Streissguth, A.P., Sampson, P.D., Barr, H.M., Bookstein, F.L., & Thiede, K. (1997). Association of prenatal alcohol exposure with behavioral and learning problems in early adolescence. Journal of the American Academy of Child & Adolescent Psychiatry, 36(9), 1187-1194. Streissguth, A.P., Bookstein, F.L., Sampson, P.D., & Barr, H.M. (1995). Attention: Prenatal alcohol and continuities of vigilance and attentional problems from 4 through 14 years. Development and Psychopathology, 7, 419-446. Carmichael Olson, H., Sampson, P.D., Barr, H.M., Streissguth, A.P., & Bookstein, F.L. (1992). Prenatal exposure to alcohol and school problems in late childhood: A longitudinal prospective study. Development and Psychopathology, 4, 341-359. B) Parent-Child Assistance Program (P-CAP)/Birth to 3 Program Funded by Washington State Legislature (Division of Alcohol and Substance Abuse); originally funded by Center for Substance Abuse Prevention (CSAP) The Parent-Child Assistance Program (PCAP), originally known as the Seattle Birth to 3 Project, began in 1991 as a 5-year federally funded research demonstration project designed to test the efficacy of a model of intensive, long-term paraprofessional advocacy with high-risk mothers who abuse alcohol or drugs heavily during pregnancy and are estranged from community service providers. The primary goal of the program is a straightforward one -- to prevent alcohol and drug exposure among the future children of these mothers. In 1996, on the basis of demonstrated positive outcomes, the Washington State Legislature appropriated funds for continuation of the Seattle program and expansion to a Tacoma site; in 1999 sites in Yakima and Spokane (including Grant County) were funded, creating a capacity to serve 360 families statewide. Since 1991, PCAP has served over 650 women and their families in Washington. The PCAP model has been commended by Drug Strategies, a Washington D.C.-based policy research institute, as one of a few federally funded interventions that are succeeding nationwide. The model has been replicated at a dozen sites in the United States and Canada. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 11 PCAP paraprofessional advocate case managers work with a caseload of approximately 15 families each, for 3 years beginning at enrollment during pregnancy or in the postpartum period. PCAP does not provide direct treatment services. Instead, advocates help substance-abusing mothers address a wide range of environmental problems, connect mothers and their families with existing community services, coordinate services among this multidisciplinary network, assist mothers in following through with provider recommendations (including obtaining substance abuse treatment and staying in recovery), and assure that the children are in safe home environments and receiving appropriate health care. A unique feature of the model is that women are never asked to leave the program because of relapse or setbacks. The lives of mothers enrolled in PCAP are characterized by poverty, upbringing by substance-abusing parents, childhood abuse, abusive adult relationships, trouble with the law, and chaotic and unstable living conditions. As products of this background they are often distrustful of community service agencies. PCAP paraprofessional advocates have themselves overcome many difficult life circumstances prior to achieving successes in school, jobs, and parenting. Because of this, the advocates are able to inspire trust and hope, and act as realistic role models and guides toward meaningful change. Notably, there has been relatively low staff turnover in a field known for high rates of burnout. Three administrative components contribute to job satisfaction and retention: weekly group staffing, individual weekly supervision by a masterUs level supervisor, and a dynamic evaluation process allowing advocates to see that they are indeed helping clients make gains, as well as to observe areas for improvement. The effectiveness of PCAP has been demonstrated. Among 156 PCAP mothers recently exiting the program: 88% completed alcohol/drug treatment; 47% had been abstinent from alcohol/drugs for more than 6 months at program exit, and 89% had more than 6 months abstinence from alcohol/drugs while in the program; 73% were using a contraceptive method on a regular basis, and 51% were using a more reliable method; 25% delivered a subsequent child, and of these 41% were clean and sober throughout the pregnancy, and another 37% quit using alcohol and drugs after pregnancy recognition. A study of 45 original PCAP clients followed-up an average of 2.5 years after graduation indicated that benefits of the program were sustained. The proportion of clients abstinent from alcohol and drugs for at least 6 months at the time of interview increased significantly from 31% at graduation to 51% at follow-up. Those abstinent for at least one year increased from 38% to 48%. Subsequent births decreased from 27% during the program to 9% during the follow-up period. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 12 Selected Publications Grant, T., Ernst, C.C., Pagalilauan G., & Streissguth, A.P. (2003). Post-program followup effects of paraprofessional intervention with high-risk women who abused alcohol and drugs during pregnancy. Journal of Community Psychology 31(3), 211-222. Grant, T., Streissguth, A., Ernst, C. (2002). Benefits and challenges of paraprofessional advocacy with mothers who abuse alcohol and drugs and their children. Zero to 3. 23(2):14-20. Grant, T.M., Streissguth, A.P., & Ernst, CC. (2002). Intervention with alcohol & drug abusing mothers and their children: The role of the paraprofessional. The Source: Newsletter of the National Abandoned Infants Assistance Resource Center, 11(3): 5-26 Kartin, D., Grant, T.M., Streissguth, A.P., Sampson, PD & Ernst, CC. (2002). Three-year developmental outcomes in children with prenatal alcohol and drug exposure. Pediatric Physical Therapy, 14: 145-153 Grant, T.M., Ernst, C.C., & Streissguth, A.P. (1999). Intervention with high-risk alcohol and drug-abusing mothers: I. Administrative Strategies of the Seattle Model of Paraprofessional Advocacy. Journal of Community Psychology, 27(1), 1-18. Click here to order. Ernst, C.C., Grant, T.M., & Streissguth, A.P. (1999). Intervention with high-risk alcohol and drug-abusing mothers: II. 3-year findings from the Seattle Model of Paraprofessional Advocacy. Journal of Community Psychology, 27(1), 19-38. Grant, T.M., Ernst, C.C., Streissguth, A.P., & Porter (1997). An advocacy program for mothers with FAS/FAE. In: Streissguth, A.P. & Kanter J. (eds.) The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities (pp. 102-112). Seattle: University of Washington Press. Grant, T.M., Ernst, C.C., McAuliff, S., & Streissguth, A.P. (1997). The Difference Game: An assessment tool and intervention strategy for facilitating change in high-risk clients. Families in Society, 78 (4), 429-432. Grant, T.M., Ernst, C.C., Streissguth, A.P., Phipps, P., & Gendler, B. (1996). When case management isn't enough: A model of paraprofessional advocacy for drug- and alcoholabusing mothers. Journal of Case Management, 5 (1), 3-11. Grant, T.M., Ernst, C.C., & Streissguth, A.P. (1996). An intervention with high risk mothers who abuse alcohol and drugs: The Seattle Advocacy Model. American Journal of Public Health, 86(12), 1816-1817. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 13 2.2 National Center on Birth Defects and Developmental Disabilities (Centers for Disease Control and Prevention) http://www.cdc.gov/ncbddd/fas/ 2.21 CDC supports the following prevention activities: A) Preventing Alcohol-Exposed Pregnancies Project CHOICES (Changing High-Risk AlcOhol Use and Increasing Contraception Effectiveness Study) Preventing Alcohol-Exposed Pregnancies Among High-Risk Women in Special Community-Based Settings In September 1997, CDC awarded cooperative agreements to three university grantees to develop brief interventions aimed at preventing alcohol-exposed pregnancies among women of childbearing age in special settings. The selected settings have access to relatively large numbers of women of childbearing age who drink at high-risk levels and do not use contraception effectively. The grantees, along with the special settings they are working in, are: Nova Southeastern University in Ft. Lauderdale, Florida Adult and Pediatric Primary Care Centers in the North Brossard Hospital District of Ft. Lauderdale Recruitment of a cohort of women concerned about problem drinking through media advertisement in the Ft. Lauderdale area University of Texas Health Sciences Center at Houston, School of Public Health in Houston, Texas Harris County Jail Houston Recovery Campus Virginia Commonwealth University, Medical College of Virginia in Richmond, Virginia Gynecology Outpatient Clinic of the Medical College of Virginia South Richmond Health Center Funded grantees worked collaboratively with one another and CDC to develop a uniform study protocol for implementation in the six special settings. The objectives of the study are to: Characterize the women in the special high-risk settings. Reduce the rate of alcohol consumption among women who are not using contraception effectively and increase contraception effectiveness among women who do not reduce their alcohol consumption. Examine the relationship between selected process variables and study outcomes. An epidemiologic survey, administered to approximately 500 women in each of the six settings, was conducted during the first phase of the study. The purpose of the survey is to characterize the overall population in the special settings in terms of prevalence and Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 14 patterns of alcohol use, prevalence of characteristics associated with heavy alcohol use, reproductive health status (for example, parity, contraceptive practices, current sexual activity, and fertility), alcohol treatment histories, and history of psychiatric illnesses. A common protocol for a behavioral intervention was developed, implemented, and evaluated in each of the six settings. A feasibility study designed to test the behavioral intervention was conducted from March 2000 until May 2001. Study participants (50 women from each of the six special settings) were provided a brief intervention of four sessions delivered over the course of eight weeks. The intervention consists of the following: In-depth assessment of alcohol use and contraceptive use patterns. Counseling about the consequences of alcohol use during pregnancy. Brief advice and counseling for moderate-to-heavy drinkers to reduce intake levels, or referral to community treatment services for alcohol-dependent drinkers. Reproductive health education about contraceptive methods, provision of contraceptive services, and client follow-up. The next phase of Project CHOICES will assess the efficacy of this behavioral intervention further in a scientifically rigorous manner (through a randomized control group design). This phase began in June 2002 and is expected to be completed by June 2004. B) Preventing Alcohol-Exposed Pregnancies Project BALANCE (Birth Control and ALcohol Awareness: Negotiating Choices Effectively) Preventing Alcohol-Exposed Pregnancies in Adolescents Many young women in the United States who drink alcohol and have unprotected sex are putting themselves at risk for an alcohol-exposed pregnancy. Not much is known about the relationship between moderate-to-heavy alcohol use, unprotected sex, and unplanned pregnancies in young women. Well-designed epidemiological and behavioral studies are needed to better understand and intervene with this population. The following project is exploring these issues. Funded Project: Virginia Commonwealth University—Richmond, Virginia Project BALANCE consists of (1) a brief epidemiologic survey, (2) focus groups, and (3) a randomized, controlled trial of a motivational intervention directed at Virginia Commonwealth University (VCU) college students from 18 to 24 years of age. The proposed intervention is a modified form of Project CHOICES, a pre-conceptional, motivational intervention designed collaboratively with CDC and three institutions, of Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 15 which VCU is one. Project BALANCE’s objectives are to identify the prevalence of risky drinking and contraceptive behaviors in this population, and to test the efficacy of an intervention in a randomized trial comparing a group receiving both assessment and one face-to-face session with a group receiving assessment only. A brief survey is being administered to college women to identify those eligible for intervention and to further characterize the population. Focus groups with college women are also underway to explore qualitative issues related to drinking, contraception, and sexual behavior. The intervention focuses both on drinking and unprotected sex, allowing a woman to modify either or both behaviors. Follow-up will occur at 1 month and 4 months. C) Preventing Alcohol-Exposed Pregnancies Preventing Alcohol-Exposed Pregnancies in Diverse Populations Rates of harmful drinking among women from diverse populations and the characteristics of those at greatest risk are not well understood. Well-designed epidemiologic studies are needed to better understand these populations of women. Likewise, intervention studies aimed at reducing the risk of alcohol-exposed pregnancies need to be designed and evaluated to determine the most effective approaches for high-risk women from diverse populations. The following projects are underway to address this issue. Funded Projects: San Diego State University—San Diego, California This project is (1) determining the frequency of self-reported alcohol consumption in a sample of low-income pregnant and non-pregnant Latinas of childbearing age and examine risk factors for alcohol use, and (2) testing the effectiveness of an educational feedback intervention among non-pregnant Latinas on intent to change alcohol consumption behaviors in a future pregnancy. Screening questionnaires and in-person interviews will provide information on the women and their use of alcohol. The intervention group will receive educational feedback on their self-reported current consumption. The intervention will assess intention to reduce current alcohol consumption and/or avoid alcohol use in a future pregnancy. Outcomes regarding future intentions will be measured through a post-intervention telephone interview 3 months following the baseline interview. University of Texas at San Antonio—San Antonio, Texas This project is exploring characteristics regarding alcohol use and pregnancy, and plans to demonstrate the effectiveness of a social action approach to prevent alcohol-exposed pregnancies among Latinas in San Antonio. The project will investigate the values, attitudes, and behaviors of Latinas regarding motherhood and pregnancy, patterns of alcohol use and familial patterns, sexual activity, and knowledge of fetal alcohol syndrome. The study will pilot test a social action intervention model that aims to alter normative drinking behavior and/or sexual behavior. Quantitative measures will be used Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 16 to determine differences in knowledge, attitudes, and behaviors and qualitative methods will be used to understand the interplay between individual and social change. Follow-up will be conducted 6 months after the intervention. D) Preventing Alcohol-Exposed Pregnancies Increasing Public Awareness of the Risks of Alcohol Use During Pregnancy Through Targeted Media Campaigns Effective media campaigns create awareness, change attitudes, and motivate individuals and communities to engage in healthy behaviors. Successful campaigns target specific audiences taking into account the unique preferences and needs of particular groups. The targeted media campaign is one strategy to enhance current prevention efforts related to fetal alcohol syndrome (FAS) and other prenatal alcohol-related effects. Evidence-based approaches to the design, implementation, and evaluation of these types of projects are needed and are currently underway to determine the most effective strategies for use in media campaigns aimed at reducing prenatal alcohol use. Funded Projects: St.-Louis University – St. Louis, Missouri This project is designing, implementing, and evaluating a media campaign targeting African-American women, aged 18 through 35 years, at risk for pregnancy. The primary purpose of the campaign is to increase knowledge and change attitudes about alcohol use during pregnancy. A comprehensive media campaign has been developed using a variety of strategies including visual, audio, and print advertisements, direct marketing, media interviews with experts, and community event exposure. The campaign is built around four core messages: (1) drinking alcohol during pregnancy harms unborn babies, (2) pregnant women should abstain from alcohol, (3) sexually active women should not drink if they could be pregnant, and (4) women at risk for an alcohol-exposed pregnancy should see a physician. Evaluation of the intervention consists of pre- and post-intervention random-digit dialing surveys of the African-American community both in St. Louis and Kansas City (control group). University of California at Los Angeles—Los Angeles, California This project is developing, implementing, and evaluating a social marketing campaign using a “narrowcasting approach” that warns women about the dangers of drinking alcohol during pregnancy. Narrowcasting refers to information that is directed to a highly specific segment of the public. The purpose of the project are to change norms and perceptions of women who are light or moderate drinkers both prior to and during pregnancy. The target groups include White, Hispanic, and African-American women, aged 18 through 30 years. Print materials have been developed and disseminated, Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 17 saturating specific neighborhoods in two communities of southern California over a 12month period, with a third community serving as a comparison group. Project partners work with community participants and professional agencies to create high-quality campaign messages and materials. Evaluation consists of a repeated cross-sectional survey design. University of Iowa—Iowa City, Iowa The goals of the project are to design, implement, and evaluate the effectiveness of a broad-based and localized media campaign aimed at reducing prenatal alcohol use in rural areas, targeting women enrolled in the Women, Infants, and Children (WIC) program. Through formative research, project staff are producing commercial-quality materials for dissemination in three channels (a broad based 30-second television commercial, a eight minute video for localized distribution in WIC clinics, and a printed pamphlet for distribution in WIC clinics) to increase awareness about the dangers of alcohol use during pregnancy. WIC clinics in rural Iowa will be paired and randomly assigned to usual-care or intervention groups. The usual-care group will be exposed to the 30-second commercial and printed pamphlet, while the intervention group will be exposed to messages in all three channels. Evaluation will consist of pre- and post-test surveys assessing changes in knowledge, interactions with health care professionals, reported alcohol use, and perceptions of normative expectations in the social network regarding consumption of alcohol during pregnancy. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 18 2.22 CDC supports the following education activities: A) Educating Families and Professionals Fetal Alcohol Syndrome Awareness and Education Project While surveys indicate that people have heard the term fetal alcohol syndrome (FAS), reports from parents, school staff, and health care providers indicate that the general level of understanding about the condition and the needs of children who have it are not well understood. The purpose of this project is to (1) develop, implement, and evaluate materials to educate parents and professionals working in school systems, public health service agencies, social service agencies, and judicial systems about FAS and other fetal alcohol-related disorders and (2) identify how to secure access to appropriate diagnostic and treatment services for affected children and their families. Funded Projects: The Arc of the United States—Silver Spring, Maryland This project is developing and testing a comprehensive curriculum that can be presented to adult learners in a workshop format. The modules address general information about FAS, components of care for the affected child, and family stressors and coping strategies. The Arc's team of seven chapters is using available resources and printed materials and creating new materials as part of the development of the comprehensive curriculum. Double ARC—Toledo, Ohio This project is developing and testing a training curriculum for parents that describes the core deficits of children with FAS; teaches effective parenting techniques; and informs how to access service resources for children, including school programs. The training curriculum for teachers describes FAS, ways to recognize children who might have the condition, and approaches to enhancing school performance for children with FAS. Education Development Center—Newton, Massachusetts This project is developing an online education package targeting teachers and parents about FAS and related disorders, and an online education package for training the trainer. Content includes a comprehensive review of the physical, neurodevelopmental, and behavioral characteristics of children with FAS; secondary disabilities; needed services; family stressors and coping strategies; and what schools can do with limited community resources. National Indian Justice Center—Santa Rosa, California This project is developing and testing a training curriculum for three-day regional training sessions focusing on medical and psychological aspects of FAS/ARND, with breakout sessions that provide information more specifically geared toward various subgroups such Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 19 as tribal court judges, state court judges, and tribal leaders. Focus groups and a community needs assessment are being conducted to inform materials development. B) Educating Families and Professionals Regional Centers for the Education and Training of Medical and Allied Health Students and Students and Professionals on Fetal Alcohol Syndrome and Other Prenatal Alcohol-Related Disorders The purposes of the FAS Regional Training Centers are to (1) develop, conduct, and analyze population-based surveys of medical and allied health students and practitioners to assess their knowledge, attitudes, and beliefs about diagnosis, treatment, and prevention of FAS and other prenatal alcohol-related disorders and to identify their perceived barriers to diagnosis, treatment, and prevention, current practices, and resources needed to improve current practice behaviors; (2) develop, implement, and evaluate educational curricula for medical and allied health students and practitioners that incorporate evidence-based diagnostic guidelines for FAS and other prenatal alcoholrelated disorders; (3) disseminate curricula to audiences; and (4) seek to have diagnostic guidelines and curricula incorporated into the training curricula of medical and allied health schools at the grantee’s university or college, other colleges and universities throughout the region, and into the credentialing requirements of professional boards. Funded Projects: Meharry Medical College – Nashville, Tennessee Morehouse School of Medicine – Atlanta, Georgia Meharry Medical College is partnering with Morehouse School of Medicine and Tennessee State University to develop the Southeastern U.S. Educational Center for Prevention of Fetal Alcohol Syndrome. At Morehouse Medical School, the program will work closely with the new National Center for Primary Care and its network of more than 150 clinics throughout the southeast. Also, via a joint program in Allied Health at Meharry and Tennessee State, contacts have been made with College of Allied Health Deans throughout the region to enhance dissemination of educational materials. The Meharry/Morehouse partnership will disseminate the FAS curriculum among medical and allied health professionals in Alabama, Florida, Kentucky, Mississippi, North Carolina, South Carolina and Tennessee. University of Medicine and Dentistry of New Jersey (UMDNJ) – Newark, New Jersey The NJ/New England Regional FAS Education & Training Center is based in the New Jersey Medical School – UMDNJ in the Departments of Preventive Medicine, Pediatrics Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 20 and Psychiatry. It is closely associated with the NJ state-funded FAS Diagnostic Centers, one of which is also located in the New Jersey Medical School. This gives the Education & Training Center direct access to child developmental specialists and pediatricians, allowing for practical assessment of strategies and materials developed as part of the CDC educational network. Through collaboration with the UMDNJ School of Allied Health Professionals, the Center also has access to online web teaching (Web CT) resources that will facilitate the development of materials useful in outreach across the New England region. The state of New Jersey has a number of other existing resources that will enhance the development of the New Jersey Regional Training Center. New Jersey convenes a state Task Force on FAS and since 1988, New Jersey has regionalized Maternal and Child Health Consortia that assist with the provision and coordination of hospital and community-based maternal and child health services. St. Louis University School of Medicine – St. Louis, Missouri The Midwest Regional Fetal Alcohol Syndrome Training Center is a collaboration among the Department of Community and Family Medicine of the University of St. Louis Medical School, University of Missouri-Columbia and the St. Louis Arc. Physician and allied health practitioner training initiatives will cover Missouri and 6 contiguous states. Highlights of the program include: plans to audit curricula at medical schools in the 7state area consortium; two-day train-the-trainer workshops with nationally recognized FAS experts; televised conferences and video-taped conference proceedings; a curriculum CD ROM; and an FAS Speaker’s Bureau. University of California at Los Angeles School of Medicine – Los Angeles, California The UCLA Medical Allied Health Education on Fetal Alcohol Exposure Center will establish community partnerships with Kaiser Permanente, Harbor - UCLA County Hospital, Edelman Mental Health Clinic, Greater Los Angeles VA Hospitals, Venice Family Clinic, Betty Ford Center and Didi Hirsch Community Mental Health Center. To disseminate the curriculum in diverse academic settings, UCLA proposes the following study sites: David Geffen School of Medicine at UCLA, Martin Luther King - Charles R. Drew University of Medicine and Science, UC Riverside, UCSF, UCSD, UC Irvine, Loma Linda, and UCLA Extension. The program will include a variety of innovative education experiences in addition to classroom learning, such as videotapes and audience response systems; individualized learning with Web-based CD-ROM learning and written materials; and small group learning opportunities that employ practicing with standardized patients and discussing written case vignettes. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 21 2.23 CDC Activities for Tracking Fetal Alcohol Syndrome: Tracking Fetal Alcohol Syndrome The reported prevalence rates of FAS vary widely depending on the population studied and the surveillance methods used. CDC studies show FAS prevalence rates ranging from 0.2 to 1.5 per 1,000 live births in different areas of the United States. Other prenatal alcohol-related conditions, such as alcohol-related neurodevelopmental disorder (ARND) and alcohol-related birth defects (ARBD), are believed to occur approximately three times as often as FAS. Population-based surveillance of FAS is important to document the magnitude of the problem and to monitor trends in the occurrence of this preventable birth defect. In 1997, the Centers for Disease Control and Prevention (CDC) established or enhanced statewide, population-based surveillance of fetal alcohol syndrome (FAS). Purposes of FAS Surveillance Network The specific purposes of the population-based Fetal Alcohol Syndrome Surveillance Network (FASSNet) initiative and the cooperative agreements are to Enhance an existing system or develop and implement a new system that uses a multiplesource surveillance methodology to enable researchers to determine the prevalence of FAS within a geographically defined area (statewide, multiple states, or regions within a state); Improve the capacity to ascertain true cases of FAS and generate population-based surveillance data; Establish relations with facilities or programs where FAS is likely to be diagnosed or children with FAS receive services, such as high-risk newborn registries, special diagnostic units, special education programs, special needs registries, and other programs or settings for children with developmental disabilities; Evaluate the completeness of the surveillance system methodology, the system's ability to generate a prevalence rate for FAS, and the potential for monitoring trends; and Implement health-care provider training and education on FAS to improve case ascertainment, referral and case-management practices, and prevention activities. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 22 2.24 CDC Activities for Monitoring Alcohol Use Among Women of Childbearing Age: Monitoring Alcohol Use Among Women of Childbearing Age CDC monitors the prevalence of alcohol use among women of childbearing age in the U.S. using the Behavioral Risk Factor Surveillance System (BRFSS). The BRFSS is an ongoing, state-based, random-digit-dialed telephone survey of individuals, 18 years of age and older. Data from BRFSS are important for monitoring alcohol-use patterns in women of childbearing age to assess and inform public health efforts to reduce these risk behaviors. These findings also help in developing strategies to identify populations that are risk drinkers and in designing prevention programs to improve pregnancy outcomes. To determine the numbers of women at risk for an alcohol-exposed pregnancy, data from the BRFSS are analyzed for women aged 18-44 years in all 50 states. Women are asked about their use of alcohol during the 30 days before the survey. Three alcohol drinking patterns are examined: any alcohol use (one or more drinks), binge drinking (5 or more drinks on any one occasion), and frequent drinking (7 or more drinks per week or binge drinking). Click here for the most recent CDC report on alcohol consumption rates among women of childbearing age. Selected Publications Alcohol use among childbearing-age women---United States, 1991--1999 Sidhu, J, Floyd, RL. [published erratum appears in Morbidity and Mortality Weekly Report 2002;51(14):308]. MMWR Morbidity and Mortality Weekly Report 2002;51:273276. [Full Text: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5113a2.htm] Combined tobacco and alcohol use by pregnant and reproductive-aged women in the U.S. Ebrahim S, Decoufle P, Palakthodi AS. Obstetrics & Gynecology 2000;96:767-771. Abstract OBJECTIVE: To assess trends in the concurrent use of alcohol and tobacco among pregnant women. METHODS: Using behavioral risk factor surveillance system data from 1987 through 1997, we determined the prevalence of concurrent tobacco and alcohol use among women aged 18-44 years by pregnancy status and indirectly estimated pregnancyrelated disuse rates. RESULTS: The percentage of women who used alcohol and tobacco decreased significantly from 1987 to 1990 among pregnant (5.4% to 3.0%) and nonpregnant women (17.6% to 14.2%), but thereafter did not change significantly. The estimated pregnancy-related disuse rate of tobacco and alcohol increased insignificantly from 70% in 1987 to 82% in 1997. Among women who used both substances, pregnancyFetal Alcohol Spectrum Disorder - International Research and Practice Inventory 23 related disuse was slightly greater for alcohol alone (74%) than for tobacco alone (52%). There was not a significant decline in concurrent use of tobacco and alcohol between 1987 and 1997 among women 18-20 years old (pregnant, 4.4% to 3.6%; nonpregnant, 13.5% to 13.7%). That age group also showed a smaller pregnancy-related disuse rate than older women (1997, 74% versus 83%). CONCLUSION: The steady trend in concurrent use of tobacco and alcohol by young women emphasizes the need for enhanced efforts to reduce the initiation of tobacco and alcohol use by young people. Women who report abuse of tobacco or alcohol should be evaluated for abuse of both substances, and interventions should address abuse of both substances. Pregnancy-related alcohol use among women in the United States, 1988 through 1995. Ebrahim SH, Diekman ST, Decoufle P, Tully M, Floyd RL. Prenatal and Neonatal Medicine 1999;4:39-46. Comparison of binge drinking among pregnant and nonpregnant women, United States, 1991-1995. Ebrahim SH, Diekman ST, Floyd RL, Decoufle P. American Journal of Obstetrics and Gynecology 1999;180:1-7. Abstract Our goal was to measure the pregnancy-related reduction in the prevalence of reported binge drinking (>/=5 alcoholic drinks per occasion) and to characterize binge drinkers among pregnant and nonpregnant women aged 18-44 years, in the United States, 19911995. We used the Behavioral Risk Factor Surveillance System data from 46 states. We used the prevalence rate ratio between pregnant and nonpregnant women to determine the magnitude of the reduction in reported binge drinking and multiple logistic regression models to identify characteristics associated with binge drinking. Between 1991 and 1995, the prevalence of binge drinking among pregnant women increased significantly from 0.7% (95% confidence interval 0.2-0.9) to 2.9% (95% confidence interval 2.2-3.6), whereas among nonpregnant women the prevalence changed little (11.3% vs 11.2%). Over the study period pregnant women were one fifth (prevalence rate ratio 0.2, 95% confidence interval 0.1-0.2) as likely as nonpregnant women to binge drink. Among various population subgroups of women, pregnancy-related reduction in binge drinking was smallest among black women and largest among women aged </=30 years and among those who had quit smoking. Among pregnant women binge drinking was independently associated with being unmarried, being employed, and current smoking. Among nonpregnant women binge drinking was independently associated with age </=30 years, nonblack race, college level education, being unmarried, being employed or a student, and current smoking. Clinicians serving women of childbearing age need to be aware of the recent rise in reported binge drinking during pregnancy, as well as the known Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 24 risk factors for binge drinking. Alcohol consumption by pregnant women in the United States during 1988-1995. Ebrahim SH, Luman ET, Floyd RL, Murphy CC, Bennett EM, Boyle CA. Obstetrics & Gynecology 1998;92:187-192. Abstract OBJECTIVE: To examine trends in alcohol use among pregnant women in the United States and to characterize pregnant women who use alcohol, with an emphasis on frequent use (at least five drinks per occasion or at least seven drinks per week). METHODS: We used the Behavioral Risk Factor Surveillance System data from 1988 through 1995 to obtain the percentage of pregnant women who used alcohol. We used multiple logistic models to identify subgroups of pregnant women who are at increased risk for alcohol use. RESULTS: Overall, 14.6% (869 of 5983) of pregnant women consumed alcohol and 2.1% (133 of 5983) consumed alcohol frequently. Among pregnant women, alcohol use decreased from 22.5% (95% confidence interval [CI] 20.8, 23.9) in 1988 to 9.5% (95% CI 7.9, 11.8) in 1992 and then increased to 15.3% (95% CI 13.1, 17.2) by 1995. Among pregnant women, frequent alcohol use decreased from 3.9% (95% CI 2.4, 5.2) in 1988 to 0.9% (95% CI 0.4, 1.6) in 1991 and then increased to 3.5% (95% CI 2.0, 5.1) by 1995. Pregnant women who were at high risk for alcohol use were college educated, unmarried, employed, or students, had annual household incomes of more than $50,000, or were smokers. Pregnant women who were at high risk for frequent alcohol use were more likely to be unmarried, or smokers. CONCLUSION: The increasing prevalence of alcohol use among pregnant women calls for increased ascertainment of alcohol use among preconceptional and pregnant women. Brief interventions by clinicians, increased referral to alcohol treatment programs, and increased use of contraception by women of reproductive age who are problem drinkers should be considered as means of preventing alcohol-exposed pregnancies. Alcohol consumption among pregnant and childbearing age women -- United States, 1991 and 1995. Centers for Disease Control and Prevention. MMWR Morbidity and Mortality Weekly Report 1997;46(16):346-350. [Full Text: http://www.cdc.gov/epo/mmwr/preview/mmwrhtml/00047306.htm] Frequent alcohol consumption among women of childbearing age, Behavioral Risk Factor Surveillance System, 1991. Centers for Disease Control and Prevention. MMWR Morbidity and Mortality Weekly Report 1994;43:328-329, 335. [Full Text: http://www.cdc.gov/epo/mmwr/preview/mmwrhtml/00030910.htm] Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 25 Prevalence and characteristics of alcohol consumption and fetal alcohol syndrome awareness -- Alaska, 1991 and 1993. Centers for Disease Control and Prevention. MMWR Morbidity and Mortality Weekly Report 1994;43:3-6. [Full Text: http://www.cdc.gov/epo/mmwr/preview/mmwrhtml/00023555.htm] Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 26 2.25 CDC Activities for Identifying Alcohol-Exposed Pregnancies through Biomarkers: Identifying Alcohol-Exposed Pregnancies through Biomarkers Moderate-to-heavy alcohol use by pregnant women is known to be harmful to the developing fetus. Currently, there is no specific laboratory marker to indicate fetal alcohol syndrome. Obtaining such a marker could lead to the identification and treatment of women at risk for an alcohol-exposed pregnancy, who may not otherwise provide this information because of the stigma associated with prenatal alcohol use. Also, research has shown that early identification of children with fetal alcohol exposure reduces secondary disabilities resulting from the condition. Possible biomarkers include maternal blood and meconium (first stool of the newborn infant) testing. The studies described below are designed to devise and test sensitive and specific biomarkers to help identify alcoholexposed pregnancies and/or newborns exposed to alcohol prenatally. Funded Projects: University Hospital of Cleveland—Cleveland, Ohio It is estimated that 1% of all newborns are affected by prenatal alcohol exposure. However, identifying alcohol-exposed newborns is difficult. Currently, there is no systematic approach, nor definitive laboratory tool that can be used for such identification. A biological marker, fatty acid ethyl esters (FAEE), would allow earlier identification and intervention for affected infants, and recognition of women at risk for alcohol abuse. This also facilitates research on dose-response relationships between alcohol exposure and alcohol-related birth defects. The project proposes that FAEE in meconium is a useful biological marker for exposure of low-to-moderate maternal alcohol use during pregnancy, and for identification of a group of infants at high risk for poor neurodevelopmental outcomes. The study seeks to validate FAEE in meconium as a biomarker of prenatal exposure to alcohol. University of Maryland—Baltimore, Maryland The purpose of this study is to investigate the use of biochemical tests and ultrasound findings to identify women who abuse alcohol and are at risk for having a child affected adversely by prenatal alcohol exposure. Criteria, derived from alcohol-use questionnaires, biochemical markers and ultrasound studies, are being developed to identify at-risk, pregnant women who need special counseling or intervention. This information will be correlated with infant development indices taken at birth and at 6 and 12 months of age to predict the prenatal risk for fetal alcohol syndrome (FAS) and other prenatal alcoholrelated conditions. Eliminating or reducing alcohol consumption during pregnancy would have a significant effect on the incidence of fetal alcohol syndrome and other prenatal alcohol-related conditions. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 27 Massachusetts General Hospital—Boston, Massachusetts The goals of this project are to: (1) identify women at risk for having an alcohol-exposed pregnancy through a combination of questionnaire screening and biochemical markers of alcohol use, and (2) motivate the women at risk to decrease their alcohol intake through brief intervention meetings and results of their blood marker levels throughout their pregnancies. Previous studies show that certain blood markers can be used to identify alcohol-using pregnant women more accurately than women’s self-reported use. This study will use a combination of blood markers and self-report to identify women at risk of having an alcohol-exposed pregnancy. Pregnant women receiving prenatal care at obstetric clinics at several sites in the Boston area receive a questionnaire to determine if they are risk drinkers. The women who are not identified as risk drinkers on the questionnaire serve as the comparison group for the study. Women who are identified as risk drinkers are asked to provide a blood sample, and a series of blood markers of alcohol use are assessed. Women with positive blood markers are then asked to participate in a series of brief interventions and agree to ongoing monitoring of and feedback on the blood markers throughout their pregnancy. Infant outcomes will be assessed on all women participating in the study and the role of specific markers on the achievement of alcohol abstinence or reduction will also be explored. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 28 2.26 CDC Developing Intervention Strategies for Children: Intervening with Children and/or Adolescents with Fetal Alcohol Syndrome or Alcohol-Related Neurodevelopmental Disorders Prenatal alcohol exposure can result in facial abnormalities, growth problems, and developmental and behavioral problems, as well as other birth defects. Children with fetal alcohol syndrome (FAS) or alcohol-related neurodevelopmental disorder (ARND) can have serious lifelong disabilities. CDC-sponsored studies find that children with FAS/ARND are at very high risk for developing secondary conditions such as difficulties in school, trouble with the law, substance abuse problems, and mental health problems. Currently, interventions for children with FAS/ARND are often non-specific, unsystematic, and/or lack scientific evaluation or validation. Grantees are working together with CDC, through a collaborative effort, to identify, develop, and evaluate effective strategies for intervening with children with FAS/ARND and their families. Through these interventions, researchers are trying to help children with FAS/ARND develop to their full potential, prevent secondary conditions, and provide education and support to caregivers and families. Funded Projects: Marcus Institute—Atlanta, Georgia This intervention focuses on Behavioral Regulation Training (BRT), as a readiness-forlearning strategy, and math skills for improving cognition. BRT teaches parents ways to modify the child’s environment to reduce excess stimulation, use appropriate social reinforcement, and communicate choices rather than commands. All children in the study population diagnosed with FAS or ARND and their families participate in the BRT and are taught self-awareness, decision-making, and verbalization of situations and actions. In addition, intervention participants receive individualized math skills training, a common area of significant disability for children with FAS/ARND. The intervention is designed for children aged 3 through 9 years. University of Washington—Seattle, Washington The purpose of this project is to explore two intervention models for school-age children. One consists of an individualized, supportive, behavioral consultation intervention for school-age children (aged 5 through 11 years) with FAS or ARND. Consultation includes FAS education, emotional/practical support, teaching child management strategies specific to children with FAS/ ARND, advocacy assistance, and school consultation. The second intervention is a school-based social communication intervention provided directly to children with FAS/ARND. This intervention targets critical deficits in social communication and peer relations and is designed to teach children (aged 8 through 12 years) how to use an interactive checklist to guide them through resolution of peer conflicts. An intervention and a control group will be compared using pre- and post-test measures, with post-tests occurring at the conclusion of the intervention and at a 9 month Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 29 follow-up. University of Oklahoma Health Services Center – Oklahoma City, Oklahoma This project uses Parent Child Interaction Therapy (PCIT) to intervene with parents and their children (aged 2 through 7 years) who have been diagnosed with FAS or ARND. The treatment group receives 90-minute group sessions once a week for 14 weeks. Behavioral specialists conduct group sessions with parents to teach them appropriate and effective behaviors and interaction techniques. Parent-child interactions are observed and individualized guidance is provided. The control group receives standard referrals and services, along with participation in a parent support group. Pre- and post-test comparisons will be made between groups at the conclusion of the intervention and at 6,12, and 18 month follow-ups. University of California—Los Angeles, California This project focuses on parent-assisted social skills training, with particular attention to development of best friend relationships. Children (aged 6 through 8 years) receiving the intervention participate in didactic training sessions, behavior rehearsal, and coaching to reduce maladaptive behaviors and promote pro-social interaction skills. Simultaneously, parents are taught about core deficits of FAS and ARND and given the companion information to their children’s intervention. A control group receives standard community care and both groups of participants are re-evaluated at 4 months post-intervention. Children’s Research Triangle—Chicago, Illinois This intervention proposes to develop a program of neurocognitive habilitation within a systematic intervention strategy for children with prenatal alcohol exposure. The target population is children (aged 6 through 12 years) diagnosed with FAS or ARND, currently in the care of the Illinois welfare system. Children and their families are randomized into two groups. Children and families participating in the treatment group receive 12 weeks of neurocognitive habilitation and psychotherapy services along with family education and case management services. Children and families participating in the control group will receive the current standard of care through existing community and school-based agencies. Pre- and post- measures will be analyzed for each group and post-test follow-up will occur at 12 and 24 months. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 30 2.3 CSAP FAS Center for Excellence Grantee Program http://www.fascenter.samhsa.gov/about/granteeintro.cfm The Center for Substance Abuse Prevention (CSAP) has funded seven FAS prevention projects. Two started in 2000: Alaska's comprehensive statewide effort and the Four-State Consortium formed by Minnesota, Montana, North Dakota, and South Dakota. These programs are dedicated to improving the science-based knowledge on diagnosed cases, risk factors, prevalence, and prevention. Five additional Community Initiated Prevention Intervention projects were funded in September 2001. These five projects are designed to field test FAS prevention approaches that have been shown to prevent, reduce, or delay alcohol use for groups at risk for having children with FAS. These projects vary and each will test different prevention interventions. Three projects are focused on statewide or multiple county areas, while four are focused on a metropolitan area or tribal group. Six of the projects are funded for 3 years and Alaska is funded for 5 years. The FAS Center for Excellence is operating a Project Coordinating Center to provide support and coordination for the grantees. The Project Coordinating Center also: Offers strategic and operational advice; Identifies common data measures across grantee programs; and Collects, manages, and analyzes data from grantees. A cross-site analysis of the grantee's programs will be conducted and evaluation of the grantee's programs will be used to identify best practices. A) Alaska's Statewide Fetal Alcohol Syndrome 5-Year Comprehensive Project Office of Fetal Alcohol Syndrome State of Alaska Department of Health and Social Services Juneau, AK Overview Alaska's Five-Year Fetal Alcohol Syndrome (FAS) Project is an effort to address issues related to FAS and other alcohol-related birth defects (ARBD) throughout Alaska. Focuses both on prevention and improvement of services to individuals and families affected by this disability. Alaska's FAS project is a comprehensive, integrated effort encompassing prevention, intervention, screening and diagnosis, and improved service delivery. Four statewide goals have been identified for the 5-year period: Prevent all fetal alcohol spectrum disorders (FASD). Screen and diagnose children at risk of FASD as early as possible. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 31 Improve lifelong outcomes through improved service delivery to families and individuals affected by FASD. Document our progress and evaluate program outcomes. The project is multidisciplinary, culturally appropriate, and community based. The approach aims to coordinate existing systems and processes that now operate separately; integrate service delivery and information management systems to the greatest extent possible; and set up structures that will be self-sustaining in the future. Alaska's Mission To prevent all alcohol-related birth defects and to improve the delivery of services to those already affected by fetal alcohol spectrum disorders. B) Effectiveness of a Culturally Focused Skills Enhancement Approach to Reduce Alcohol Use in Native Women College of Public Health University of Arizona Tucson, AZ Overview The University of Arizona College of Public Health is implementing and evaluating the effectiveness of a culturally based cognitive/behavioral intervention to reduce alcohol use among adult Native American women of childbearing age. This 3-year study will compare the effectiveness of a skills training approach with an education-only approach with 280 Pasqua Yaqui women. Mission To reduce alcohol use and prevent FAS births among Pasqua Yaqui women of childbearing age. C) Four-State Consortium on Fetal Alcohol Syndrome/Fetal Alcohol Effects Center for Disabilities Department of Pediatrics School of Medicine University of South Dakota Sioux Falls, SD Overview The Four-State Consortium on Fetal Alcohol Syndrome/Fetal Alcohol Effects (FAS/FAE) includes Minnesota, Montana, North Dakota, and South Dakota. The Consortium improves data collection systems to understand the extent of the problem; identifies female populations in the region at risk for giving birth to children with FAS; evaluates and implements prevention programs; and evaluates the effectiveness of a multistate effort to prevent FAS/FAE. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 32 Mission To build the capacity in the States of Minnesota, Montana, North Dakota, and South Dakota through the establishment of the Four-State Consortium to reduce the risk factors that result in children being born affected by fetal alcohol syndrome or fetal alcohol effects. D) Rural Prevention of Fetal Alcohol Syndrome and Fetal Alcohol Effects Bluegrass Prevention Center Bluegrass Regional Mental Health-Mental Retardation Board, Inc. Lexington, KY Overview The Bluegrass Prevention Center is evaluating the effectiveness of a multicomponent fetal alcohol syndrome (FAS)/fetal alcohol effects (FAE) prevention approach in rural communities in 13 central Kentucky counties. The 3-year study will test a multicomponent strategy focusing on health care provider interventions with pregnant women, an awareness campaign, and training on diagnosis and early intervention through family care practices and early childhood service providers. Mission To reduce FAS/FAE births by educating county health department staff who deal with pregnant women; developing a community awareness campaign; and providing training to pediatric, foster care, and elderly childhood service workers on diagnosis and early intervention. E) Baby First Partnership Project Governor's Institute on Alcohol and Substance Abuse, Inc. Research Triangle Park, NC Overview The Baby First Partnership Project is evaluating two alcohol abuse interventions in Wake County, North Carolina to prevent the birth of children with fetal alcohol syndrome/fetal alcohol effects (FAS/FAE). The 3-year study will implement and test interventions that educate health care providers about FAS screening. It will also assist in preventing women who are at risk for using alcohol during pregnancy from giving birth to infants with FAS/FAE. Mission To improve health care services to women at risk of delivering babies with FAS, to provide support and mentoring services, and to educate health care providers about prevention and screening for women at risk. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 33 F) Beyond the 7th Generation: A Native American Fetal Alcohol Syndrome/AlcoholRelated Birth Defects Prevention/Intervention Project American Indian Institute University of Oklahoma Norman, OK Overview The American Indian Institute at the University of Oklahoma is evaluating the effectiveness of the 7th Generation FAS/FAE Prevention Curriculum on American Indian youth in several school systems, faith-based organizations, and youth clubs. The 3-year study will implement and test the curriculum with 1,500 youths in grades 6 through 12 to determine its effectiveness in preventing, delaying, or reducing problems associated with substance abuse. Mission To implement and test the scientifically developed curriculum, 7th Generation FAS/FAE Prevention Curriculum, with 1,500 youths in grades 6 through12 to reduce the likelihood of behaviors that will lead women to giving birth to babies with FAS. G) Fetal Alcohol Syndrome/Alcohol-Related Birth Defects Prevention: Research to Practice Fetal Alcohol and Drug Unit School of Medicine University of Washington Seattle, WA Overview The Fetal Alcohol and Drug Unit at the University of Washington is evaluating a successful substance abuse prevention and intervention program for women at risk for giving birth to infants with fetal alcohol syndrome (FAS) and associated disorders. The 3year study will use multiple measures to evaluate the program in new settings, including women's use of substance abuse treatment, their reduction in alcohol and drug use, improvements in the access and usage of community services, their use of family planning, and the appropriate placement of exposed children. Mission To enable communities to respond, through long-term advocacy, to the problems of mothers who have abused alcohol and drugs during pregnancy and to the needs of their children. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 34 2.4 FAS/ARBD Prevention: Research to Practice http://depts.washington.edu/fadu/FADU.projects.html#CSAP Funded by the Center for Substance Abuse Prevention (CSAP), a division of the Substance Abuse and Mental Health Services Administration (SAMHSA) Over the past 12 years they have developed and tested a paraprofessional advocacy intervention model (Parent-Child Assistance Program, or PCAP) to intervene with highrisk mothers who abuse alcohol and drugs during pregnancy. The research project "FAS/ARBD Prevention: Research to Practice" field-tests a modification of the PCAP model. The project (1) enrolls women who primarily abuse alcohol during pregnancy; (2) identifies and recruits subjects through community referral or through a postpartum screening process at two hospitals (one in Seattle and one in Tacoma) using a method we have developed and tested previously on postpartum floors at several urban hospitals; and (3) tests a more intensive and focused intervention for a shorter period of time (12 months instead of 36). A total of 120 women will be enrolled and randomized to either of two treatment groups: the 12-month PCAP intervention (PCAP12) or the community standard of care (CSC). The primary aim of the project is to prevent future alcohol- affected births, either by motivating women to abstain from alcohol during their next pregnancy, or by educating and encouraging alcohol-abusing women to use reliable birth control methods on a regular basis. After 12 months of PCAP12 intervention or CSC, we will evaluate (a) utilization of substance abuse treatment, (b) reduction in maternal alcohol and drug use, (c) maternal use of effective family planning methods, (d) improved access and successful utilization of appropriate community services (e.g. housing, health, mental health, domestic violence services). This project will maximize primary prevention efforts by targeting limited resources to women at highest risk for producing a child with Fetal Alcohol Syndrome (FAS) and Alcohol Related Birth Disorders (ARBD). Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 35 3. Research Publications – Prevention & Intervention of FASD Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 36 3.1 Culturally Diverse Populations A model for fetal alcohol syndrome prevention in Native American population. Ma, G.X.; Toubbeh, J.; Cline, J.; & Chisholm, A. (2002). In Ethnicity and substance abuse: Prevention and intervention, Ma, G.X. & Henderson, G. (Eds). Springfield, IL, US: Charles C. Thomas Publisher, Ltd. xviii, (pp. 284-295). Abstract Describes the development and evaluation of a fetal alcohol syndrome (FAS) prevention program. Program objectives were to develop substance abuse prevention (SAP) products, as well as materials and tools, with a special emphasis on communication strategies to address prevention and/or reduction of the incidence of FAS among Native American (NA) adolescents. The health communication process model was used as a theoretical foundation for this SAP program design. The model involves: (1) planning and strategy selection, (2) selecting communication channels and materials, (3) developing materials, (4) implementation, (5) assessing effectiveness, and (6) feedback to refine the program. Consistent with this model, data are presented in 3 segments, as Phase 1, Professional Needs Assessment (49 prevention professionals); Phase 2, Development of FAS Prevention Program; and Phase 3, Evaluation (90 6th through 8th grade students, 85 completing pre- and post-tests). The survey revealed: (1) the lack of adequate and appropriate prevention resources and programs on alcohol use and its relationship to FAS for early adolescents and (2) the dearth of programs that address the needs of early adolescents at high risk of involvement in decision-making and behavior that can lead to addiction or FAS. [PsycINFO] Native American adolescents' views of fetal alcohol syndrome prevention in schools Ma, G.X.; Toubbeh, J., Cline, J.; Chisholm, A. Journal of School Health. 68(4):131-6, 1998 Apr. Abstract Alcohol is the most commonly abused substance among adolescents in the United States. Adolescent females are recognized as one group at risk for giving birth to babies with fetal alcohol syndrome (FAS). Sixth through eighth grade Native Americans were surveyed about their attitudes toward and knowledge of FAS risk factors and prevention strategies. Data revealed that 52% of students drank alcohol prior to the survey. Though sexually active, students lacked knowledge about the relationship between alcohol and FAS. The study revealed 1) limited prevention programs in middle schools and 2) the most influential factor in determining attitudes and decisions about alcohol use was the Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 37 immediate family. Students felt FAS prevention is an important topic in school health education, noting the important role peers play in teaching and role modeling. Various strategies incorporating music and communication technology such as videotape and computer-assisted interactive tools into prevention materials are discussed. [Medline] Fetal alcohol syndrome among Native American adolescents: A model prevention program. Ma, G.X.; Toubbeh, J., Cline, J.; Chisholm, A. Journal of Primary Prevention. Vol 19(1) Fal 1998, 43-55. Abstract Surveyed 49 prevention specialists and gatekeepers in major prevention programs in 6 states with large American Indian populations in order to design and evaluate a viable prevention strategy targeting Native American adolescents at highest risk of engaging in behaviors that lead to fetal alcohol syndrome births. The results indicate that a community-based prevention program targeting 6th-8th grade students had the highest probability of success. Specific strategies, including types of communication media, materials and tools acceptable to the target population, as well as the role of parents, extended family, peers, and culture are discussed. [PsycINFO] Fetal alcohol syndrome--South Africa, 2001. Centers for Disease Control and Prevention (CDC). MMWR Morb Mortal Wkly Rep. 2003 Jul 18;52(28):660-2. Abstract Fetal alcohol syndrome (FAS) is caused by maternal alcohol use during pregnancy and is one of the leading causes of preventable birth defects and developmental disabilities. The FAS phenotype is characterized by a combination of facial dysmorphic features, growth retardation, and central nervous system (CNS) abnormalities. State-based estimates of the prevalence of FAS in the United States vary from 0.3 to 1.5 per 1,000 live-born infants. Recently, the highest prevalence of FAS worldwide was reported among first-grade children in a wine-growing region in the Western Cape province of South Africa. Investigators for the National Institutes of Alcoholism and Alcohol Abuse (NIAAA) reported a FAS prevalence of 40.5 to 46.4 per 1,000 children aged 5-9 years in one community in Western Cape. To determine whether FAS was associated exclusively with the wine-growing region in Western Cape or was more endemic in other areas of the country, CDC, in collaboration with the University of Witwatersrand and the Foundation for Alcohol Related Research in Johannesburg, South Africa, conducted a prevalence Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 38 study in Gauteng province and is developing ongoing surveillance and prevention activities. This report summarizes the findings of the study, which indicate a high prevalence of FAS among first-grade children in four nonwine-growing communities around Johannesburg. Because South Africa has limited resources and many competing health problems (e.g., human immunodeficiency virus/acquired immunodeficiency syndrome, tuberculosis, and sexually transmitted diseases), integrating prenatal alcoholexposure prevention activities with existing prevention programs should be explored. [Pubmed] Relationship of Prenatal Alcohol Use with Maternal and Prenatal Factors in American Indian Women Kvigne, V.L.; Bad-Heart-Bull, L.; Welty, T.K.; Leonardson, G.R.; Lacina, L. Social Biology, 1998, 45, 3-4, fall-winter, 214-222. Abstract Demographic factors & patterns of substance use are comparatively examined among 177 Northern Plains Indian women who did, vs did not, consume alcohol during pregnancy, based on self-administered questionnaire data. Compared with nondrinkers, subjects (Ss) who drank during pregnancy were more likely to be single, have less education, & have less access to transportation resources. Ss who drank during pregnancy consumed more alcohol more frequently before pregnancy than did Ss who drank before but not during pregnancy; they were also more likely to smoke cigarettes & use illicit drugs, have parents who drank, feel they drank the same or more than other pregnant women, or have experienced more relationship breakups & physical & emotional abuse. Prenatal patients who drink alcohol need more intensive counseling regarding their multiple risk behaviors. [Sociological Abstracts 1986-2002/12] Understanding drinking during pregnancy among urban American Indians and African Americans: Health messages, risk beliefs, and how we measure consumption. Kaskutas, L.A. Alcoholism: Clinical & Experimental Research. Vol 24(8) (pp 12411250), 2000. Abstract Background: Little is known about urban American Indian and African American women's drinking during pregnancy, or their beliefs about the risk of doing so. However, rates of fetal alcohol syndrome (FAS) are believed to be highest among those ethnic Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 39 groups. Methods: The Developing Effective Educational Resources (DEER) project recruited pregnant American Indian, African American, and white women from urban California areas (n = 321), to develop culturally appropriate consumption measures, to gather epidemiological data about drinking during pregnancy, and to assess exposure and reactions to health warnings intended to encourage abstinence during pregnancy. Results: The study found high levels of exposure to health warnings among all ethnic groups, but many women were unclear about the actual consequences of FAS, about the risk of drinking even beer or wine or wine coolers, or about the value of reducing intake at any time during pregnancy. The majority of the women who drank malt liquor, fortified wine, wine, and spirits reported having larger than standard drinks, and daily drinkers had the highest levels of reporting error. When drink size was considered in the calculation of alcohol volume, average daily volume of consumption during pregnancy increased to the FAS risk level (average daily volume >= 1) in the overall sample and among the African American and white subjects. Conclusions: Because some women, especially heavy drinkers, will continue drinking despite exposure to abstention-oriented health messages, it may be prudent to develop campaigns and interventions that provide factual information to help at-risk women reduce their drinking during pregnancy. Women could be advised of beverage equivalency, of standard drink sizes, and of how their own drinks compare with standard ones. Reliance on standard drink sizes in research can result in significant underreporting of consumption, especially among pregnant risk drinkers. Knowledge and misconceptions among inner-city African-American mothers regarding alcohol and drug use. Donnelly, F.M. American Journal of Drug and Alcohol Abuse, v. 24 no. 4 (November 1998) p. 675-83. Abstract Beliefs among African-American mothers living in the inner city with regard to alcohol and drug abuse were assessed. A total of 84 postpartum mothers known to have had problems with alcohol and drug abuse during pregnancy received the Department of Education's publication Growing Up Drug Free: A Parent's Guide to Prevention. The results of a phone-administered quiz revealed that half of the women were not aware that alcohol is the most frequently used drug in the U.S. Few of the women knew that alcohol, tobacco, and marijuana are the 3 drugs most frequently used by children. Lack of teenage experience of substance use was thought to raise the risk of chemical dependency. Drinkers and drug users were 4-fold more likely to correctly answer a minimum of 6 questions. Parental knowledge of substance use, and particularly use of alcohol, remains insufficient. [Social Sciences Abstracts] Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 40 3.2 Prevention / Intervention Fetal alcohol syndrome prevention research. Hankin, J.R.; Health & Research World, Vol 26(1) 2002, 58-65. Abstract Discusses fetal alcohol syndrome (FAS) prevention activities. The intervention spectrum for FAS described by the Institute of Medicine of the National Academy of Sciences comprises the 3 components of universal, selective, and indicated prevention. Research pertaining to universal efforts have focused on media attention to drinking during pregnancy, the value of warning posters and alcohol beverage warning labels, and increases in FAS knowledge. Brief interventions for pregnant women can successfully reduce alcohol intake during pregnancy. [PsycINFO] Fetal alcohol syndrome/fetal alcohol effects: A survey of Alaskan educators. Binns, W.R. Dissertation Abstracts International. Vol 61(7-A), Feb 2001, 2589, US: University Microfilms International. Abstract Fetal alcohol syndrome (FAS) is one the leading causes of mental retardation and often results in significant social, learning, and behavioral challenges. Early identification and interventions for students with FAS and fetal alcohol effects (FAE) serves an especially critical function in rural Alaskan settings. This study reports educators' level of knowledge/awareness of issues surrounding FAS/FAE in educational settings in Alaska. The primary method used in the study was a 64-item, self-administered mail survey, completed by 271 (49%) of the 550 educators in the sample. The survey attempted to identify predictors of educators' knowledge/awareness, perceived skill level, and ability to access resources for working with students with FAS/FAE. It also identified previous training experiences and possible preferred methods for future training opportunities. Data collected through the survey instrument were augmented and supported by qualitative data collected from two subsequent focus groups. There was a high degree of consistency between the survey data and the qualitative findings generated by the study's focus groups. Educators who had more direct, personal experience with students with FAS/FAE were more knowledgeable, had better perceived skills, and had more confidence in these skills than educators who had worked with fewer students with FAS/FAE. Participation in the special education process, self-directed training efforts, and identifying FAS/FAE as a significant problem in one's home community were also significant positive predictors. Several predictor variables had significant negative predictive relationships with the Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 41 dependent variables. Educators who were of Alaska Native ethnicity scored significantly lower on the knowledge/awareness and skill level factors on the survey. Over 68% of Alaska Native respondents had a high school diploma as their highest educational degree. Most of the Alaska Native respondents worked primarily with the preschool population in rural and remote preschool programs. This combination of predictors identified paraprofessionals with no college degree who worked in rural preschool settings as prime candidates for future training efforts on FAS/FAE. [PsycINFO] Variable structure/variable performance: Parent and teacher perspectives on a school-age child with FAS. Timler, G.R. & Olswang, L.B. Journal of Positive Behavior Interventions. Vol 3(1) Win 2001, 48-56. Abstract A case study of a school-age boy with a diagnosis of fetal alcohol syndrome is presented to explore the parent's and teacher's viewpoints about the best educational program for him. During open-ended interviews, the child's mother and teacher described his strengths and challenges differently, ultimately leading to disagreement about the most appropriate educational placement and supports for this child. Analysis of these interviews indicated that differences in environmental structure and adult expectations for child behavior across the home and school settings are one likely source for these diverse viewpoints. These results suggest that intervention planning must take into account this child's variations in performance across contexts. Recommendations for positive behavioral supports are provided to facilitate the child's performance across home and school settings. [PsycINFO] Twelve-year follow-up of children exposed to alcohol in utero. Autti-Raemoe, I. Developmental Medicine & Child Neurology. Vol 42(6) Jun 2000, 406-411. Abstract 82 women who were consuming alcohol while pregnant attended a special clinic at the University Central Hospital, Helsinki with the aim of reducing heavy drinking during pregnancy. The children born to these women were followed up regularly. During their preschool years the children were assessed to have fetal alcohol syndrome, fetal alcohol effects, alcohol-related neurodevelopmental disorder, pre- and/or postnatal growth retardation, or normal cognitive and somatic growth. Of the original children, 70 of 82 could be traced at the age of 12 yrs. Through semi-structured interview and contact with Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 42 the health and social care authorities, information was gathered about schooling, family structure, whether help had been sought for behavioral difficulties and major adverse events in the family. The longer the intrauterine alcohol exposure and the more severe the diagnosis related to prenatal alcohol exposure, the more often the children required special education, were temporarily or permanently taken into care, and had behavioral problems. There is a considerable need for prolonged multidisciplinary follow-up and support of all children whose mothers have not been able to reduce drinking in early pregnancy, whether or not cognitive disturbances are evident in early childhood. [PsycINFO] Fetal alcohol syndrome (FAS) primary prevention through FAS diagnosis: I. Identification of high-risk birth mothers through the diagnosis of their children. Astley, S.J.; Bailey, D.; Talbot, C. & Clarren, S.K. Alcohol & Alcoholism. Vol 35(5) Sep-Oct 2000, 499-508. Oxford Univ Press, United Kingdom Abstract Conducted a 5-yr, fetal alcohol syndrome (FAS) primary prevention study to: (1) assess the feasibility of using a FAS diagnostic and prevention clinic as a center for identifying and targeting primary prevention intervention to high-risk women; (2) generate a comprehensive, lifetime profile of these women; (3) identify factors that have enhanced and/or hindered their ability to achieve abstinence. Two sources of patients with FAS were used to address the 3 objectives. The results of this study are presented in 2 parts: work on objective 1 is summarized in the present paper; whereas that on objectives 2 and 3 is summarized in the accompanying paper (see record 2000-00931-010). One out of every 3 patients evaluated in the FAS Diagnostic and Prevention Network (DPN) clinics was diagnosed with FAS or static encephalopathy/alcohol exposed. The birth mothers of 1 out of every 3 of these children diagnosed with FAS or static encephalopathy/alcohol exposed could be located and directly contacted. Half of the birth mothers directly contacted were still at risk for producing more children damaged by prenatal alcohol exposure. Thus, 1 out of every 18 children evaluated in the FAS DPN clinics had a birth mother who could be found and was at risk of producing more children damaged by prenatal alcohol exposure. [PsycINFO] Fetal alcohol syndrome (FAS) primary prevention through FAS diagnosis: II. A comprehensive profile of 80 birth mothers of children with FAS. Astley, S.J.; Bailey, D.; Talbot, C. & Clarren, S.K. Alcohol & Alcoholism. Vol 35(5) Sep-Oct 2000, 509-519. Oxford Univ Press, United Kingdom Abstract Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 43 Conducted a 5-yr, fetal alcohol syndrome (FAS) primary prevention study to: (1) assess the feasibility of using a FAS diagnostic and prevention clinic as a center for identifying and targeting primary prevention intervention to high-risk women; (2) generate a comprehensive, lifetime profile of these women; (3) identify factors that have enhanced and/or hindered their ability to achieve abstinence. Comprehensive interviews were conducted with 80 women (aged 23.1-55.4 yrs), who had given birth to child diagnosed with FAS, to document their sociodemographics, reproductive and family planning history, social and healthcare utilization patterns, adverse social experiences, social support network, alcohol use and treatment history, mental health, and intelligence IQ. Relative to the women who had not achieved abstinence, the women who had achieved abstinence had significantly higher IQs, higher household incomes, larger more satisfactory social support networks, were more likely to report a religious affiliation, and were more likely to be receiving mental health treatment for their mental health disorders. The rate of unintended pregnancies and alcohol-exposed pregnancies was substantial. [PsycINFO] Reducing the risk of alcohol-exposed pregnancies: a study of a motivational intervention in community settings. Ingersoll, K.; Floyd, L.; Sobell, M.; Velasquez, M.M.; Project CHOICES Intervention Research Group. Pediatrics. 111(5 Part 2):1131-5, 2003 May. Abstract OBJECTIVES: To test the feasibility and impact of a motivational intervention in reducing drinking and/or increasing effective contraception in women who are at risk for an alcohol-exposed pregnancy. METHODS: A multisite single-arm pilot study was conducted in 6 community settings in 3 large cities. A total of 2384 women were screened for eligibility; 230 were eligible on the basis of their alcohol use and lack of contraception. Of the eligible women, 190 consented and were enrolled, and 143 (75.3%) completed the 6-month follow-up. The intervention consisted of 4 manual-guided motivational counseling sessions delivered by mental health clinicians and 1 contraceptive counseling session delivered by a family planning clinician. Outcome measures include intervention completion rates, alcohol use (frequency, quantity, and bingeing), contraceptive use and effectiveness, and risk for alcohol-exposed pregnancy. RESULTS: Among women who completed the 6-month follow-up, 68.5% were no longer at risk of having an alcohol-exposed pregnancy; 12.6% of women who completed the program reduced drinking only; 23.1% used effective contraception only; and 32.9% reported both. Results were consistent across the 6 diverse high-risk settings. CONCLUSIONS: This study provides evidence that providing 4 sessions of motivational interviewing plus a contraception counseling session is feasible and strongly suggests that this intervention can decrease the risk of alcohol-exposed pregnancy in women in highFetal Alcohol Spectrum Disorder - International Research and Practice Inventory 44 risk settings. Additional investigation in a randomized controlled trial is warranted. [Medline] A brief intervention for prenatal alcohol use: an in-depth look. Chang, G.; Goetz, M.A.; Wilkins-Haug, L.; Berman, S. Journal of Substance Abuse Treatment. 18(4):365-9, 2000 Jun. Abstract About 20% of pregnant women will drink alcohol, even though no universally safe level of prenatal alcohol consumption has been established. This study of 123 alcohol screenpositive pregnant women receiving a brief intervention in the 16th week of gestation examines the relationship of drinking goals, reasons for the goals, recognition of situations increasing risk of drinking, and subsequent antepartum consumption. While women who named abstinence as their antepartum drinking goal were more likely not to be consuming alcohol at the time of study enrollment (chi(2) = 16.80, df = 1, p =.001), current drinkers who named abstinence as their goal did reduce subsequent prenatal alcohol use (chi(2) = 10.04, df = 1, p =.002). All current drinkers who indicated fetal alcohol syndrome as a reason not to drink reduced their subsequent alcohol consumption (chi(2) = 11.04, df = 1, p =.001). Future efforts may include the partners and support systems of pregnant women in education or intervention programs to reduce prenatal alcohol consumption to enhance their effectiveness. [Medline] Is there evidence to show that fetal alcohol syndrome can be prevented? Murphy-Brennan, M.G.; Oei, T.P. Journal of Drug Education. 29(1):5-24, 1999. Abstract Fetal Alcohol Syndrome (FAS) is currently the major cause of mental retardation in the Western world. Since FAS is not a natural phenomenon and is created by mixing alcohol and pregnancy, the solution to decreasing the incidence of all alcohol-related birth defects is therefore entirely preventable. To date, little is known about the effectiveness of prevention programs in reducing the incidence of FAS. Therefore, it is the intention of this article to review the effectiveness of prevention programs in lowering the incidence of FAS. The present review revealed that prevention programs, to date, have been successful in raising awareness of FAS levels across the groups examined. However, this awareness has not been translated into behavioral changes in "high risk" drinkers as consumption levels in this group have decreased only marginally, indicating prevention programs have had minimal or no impact in lowering the incidence of FAS. Urgent steps must now be taken to fully test prevention programs, and find new strategies involving Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 45 both sexes, to reduce and ultimately eliminate the incidence of FAS. [Medline] Identification of children with fetal alcohol syndrome and opportunity for referral of their mothers for primary prevention--Washington, 1993-1997. Anonymous. MMWR - Morbidity & Mortality Weekly Report. 47(40):861-4, 1998 Oct 16. Abstract Heavy maternal use of alcohol during pregnancy can cause permanent birth defects, including fetal alcohol syndrome (FAS). Although these alcohol-related defects are entirely preventable, the factors associated with maternal use of alcohol during pregnancy are complex and often resistant to change. In addition, not all women who drink heavily will produce children with FAS. Although targeting primary prevention efforts to all women at risk for drinking during pregnancy is ideal, limited resources require targeting women at the highest risk for producing children affected by prenatal alcohol exposure. One such population is women who have already given birth to an alcohol-affected child. This high-risk population is not easily identified because not all children with FAS have their condition diagnosed, and these birth mothers are often separated from their children during the first few years of the child's life, often before a diagnosis of FAS has been considered. However, once identified, these women are receptive to intervention. To identify a population of women at highest risk for a future alcohol-exposed pregnancy through diagnosing a previously affected birth child, researchers at the University of Washington developed the Fetal Alcohol Syndrome Diagnostic and Prevention Network (FAS DPN). This report summarizes the results of this program and documents the feasibility of identifying persons who may have FAS so their condition can be diagnosed and their birth mothers can be identified and referred to prevention services. [Medline] Attitudes and knowledge about drinking: relationships with drinking behavior among pregnant teenagers. Cornelius, M.D.; Lebow, H.A.; Day, N.L. 1997. Journal of Drug Education. 27(3):231-43, Abstract Data were collected on the drinking behavior of 415 pregnant adolescents from 1990 to 1994. The relationships between knowledge and attitudes about drinking and drinking behavior were examined. Knowledge about drinking was not related to average daily volume of alcohol before or during pregnancy. Those with specific knowledge about fetal alcohol effects drank less before pregnancy, and in the first trimester, and were also less Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 46 likely to drink to intoxication. Among drinkers, general knowledge about drinking was significantly related to a decrease in drinking between pre-pregnancy and first trimester, as well as between first and third trimesters. Those with more intolerant attitudes about drinking drank less before and during pregnancy. They had fewer episodes of binge drinking, intoxication, negative consequences, and problem drinking during pregnancy. They were more likely to decrease drinking from the first to third trimesters. These relationships are relevant to developing effective education programs for the high-risk group of pregnant teenagers who drink. [Medline] A multiple-level, comprehensive approach to the prevention of fetal alcohol syndrome (FAS) and other alcohol-related birth defects (ARBD). May, P.A. International Journal of the Addictions. 30(12):1549-602, 1995. Abstract A comprehensive program for the prevention of fetal alcohol syndrome (FAS) and alcohol-related birth defects (ARBD) must consider multiple approaches and utilize knowledge from a variety of academic disciplines. Issues related to culture, society, behavior, belief systems, and medicine must all be considered for both etiology and solutions. A broad paradigm such as a public health model integrates various elements of approach. Because FAS and other levels of ARBD form a spectrum, from severe to negligible damage, a variety of drinking patterns with various characteristics and etiologies have to be addressed. This paper describes a multiple-level, comprehensive program with primary, secondary, and tertiary prevention components. Practical recommendations are proposed for addressing ARBD in a variety of arenas. While secondary and tertiary prevention hold promise for short-term reduction of FAS and ARBD prevalence, comprehensive prevention serves both short- and long-term effects. Multiple level prevention efforts are well served by clear and compelling vision and mission statements, and require careful evaluation. [Medline] Alcohol-related knowledge, attitude, belief and behavior (KABB) surveys of Alaskan health professionals. The Alaska Fetal Alcohol Syndrome Prevention Steering Committee. Anonymous. Alaska Medicine. 37(1):5-9, 1995 Jan-Mar. Abstract Surveys were conducted to identify alcohol-related and fetal alcohol syndrome training and resource needs of health care providers in the state of Alaska. Surveys were mailed to all obstetrician/gynecologists, pediatricians, family practitioners, and public health nurses Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 47 in 1992 and 1993. The majority of respondents (95-100%) agreed it was their role to address alcohol abuse problems among their patients and their patient's families. The health care providers feeling very or somewhat prepared to deal with alcohol issues were more likely to report that they always refer alcohol-abusing patients to alcohol treatment programs (52% of 158) than those feeling unprepared (24% of 68) (Prevalence ratio 2.2, 95% CI and 2 over black square]; [1 and 2 over black square].4, 3.5]). The survey results identify a need to facilitate referrals from health care providers. Training to improve provider's level of preparation in dealing with patients in the area of alcohol abuse is indicated and may enhance referrals to treatment services. [Medline] Evaluation of a self-help program to reduce alcohol consumption among pregnant women. Reynolds, K.D.; Coombs, D.W.; Lowe, J.B.; Peterson, P.L. & Gayoso, E. Journal of the Addictions. 30(4):427-43, 1995 Mar. International Abstract This study tested a cognitive-behavioral intervention for reducing alcohol consumption among economically disadvantaged pregnant women. The intervention included a 10minute educational session and a nine-step self-help manual. Women attending public health maternity clinics completed a screening questionnaire, a pretest questionnaire, were randomly assigned to receive the self-help intervention or usual clinic care, and completed a posttest questionnaire. A higher alcohol quit rate was observed among the intervention participants (88%) than controls (69%). The effect was strongest for "light" drinkers, African-Americans, and non-Protestants. This approach may be useful in clinics where staff time is limited. [Medline] Alaska/Russian Far East behavioral health projects: a progress report on recent activities. Richards, B.; Lowe, M. & Starlings, M.J. Alaska Medicine. 36(3):137-43, 1994 Jul-Sep. Abstract A number of "behavioral health" exchange activities between Alaska and the Russian Far East took place during 1992-93. These included visits by a psychiatrist running one of the first "private polyclinics" in Magadan and by a narcologist to discuss the latest developments in alcohol services; a Behavioral Health Conference where Native health workers from Russia and Alaska shared experiences; beginning a multi-year epidemiology project; and a project to assess needs for a fetal alcohol syndrome (FAS) Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 48 prevention program in Magadan. [Medline] The prevention of prenatal alcohol use: a critical analysis of intervention studies. Schorling, J.B. Journal of Studies on Alcohol. 54(3):261-7, 1993 May. Abstract Alcohol is a major cause of birth defects and mental retardation in the U.S. The yearly cost to care for those affected has been estimated to be over $300 million. Prenatal education and counseling have been advocated as techniques to reduce alcohol use in pregnancy. The purpose of this study was to critically review investigations that used these methods in order to determine their effectiveness. Reports of relevant studies were found by searching Medline, the ETOH database and bibliographies of primary sources. Only five studies were identified that met predetermined selection criteria. As judged by usual methodologic standards for intervention programs, only one was of acceptable quality. None employed a randomized design, and only two compared the treatment group to a control group. Both these studies found no difference in alcohol use between control and intervention groups. An ethical argument was used by several authors to justify performing inadequately controlled studies. Since no intervention has proven to be superior to the usual care delivered to pregnant women, this problem can be overcome through the use of controls who receive this level of care. Despite the public health importance of prenatal alcohol use, interventions to alter this behavior have not been rigorously evaluated, and the benefits of any specific approach are unclear. Randomized trials are ethically justified and guidelines for undertaking such studies are proposed. [Medline] Residential programs for persons with FAS: Programming and economics. Hess, J.J.Jr. & Niemann, G.W. In: The challenge of Fetal Alcohol Syndrome: Overcoming secondary disabilities. Streissguth, Ann (Ed); Kanter, Jonathan (Ed). (1997). (pp. 189-197). Abstract (from the chapter) Providing effective treatment programs for individuals with Fetal Alcohol Syndrome (FAS) requires the development of environments conducive to positive treatment outcomes. This chapter will discuss both the programmatic and economic pros and cons associated with congregate (i.e., institutional) and communitybased models of residential programs and advocate for the development of a continuum of services for individuals with FAS. [PsycINFO] Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 49 An advocacy program for mothers with FAS/FAE. Grant, T.; Ernst, C.; Streissburg, A.; Porter, J. In: The challenge of Fetal Alcohol Syndrome: Overcoming secondary disabilities. Streissguth, Ann (Ed); Kanter, Jonathan (Ed). (1997). (pp. 102-112). Abstract (from the chapter) Pregnancy and childbirth among mothers who themselves have Fetal Alcohol Syndrome/Fetal Alcohol Effects is a topic that has not been adequately addressed, yet it is a problem with which clinicians who work with fetal alcohol affected patients are all too familiar. In this chapter, we review data from a recent study of this topic and describe an existing advocacy program that we believe is promising for working with these high-risk mothers during a critical time in their lives. This chapter examines the birth to 3 advocacy model. This model was developed to work with the highest risk mothers who abused alcohol and/or drugs during pregnancy and received little or no prenatal care. [PsycINFO] Case managers and independent living instructors: Practical hints and suggestions for adults with FAS. Schmucker, C.A. In: The challenge of Fetal Alcohol Syndrome: Overcoming secondary disabilities. Streissguth, Ann (Ed); Kanter, Jonathan (Ed). (1997). (pp. 96-101). Abstract (from the preface) This chapter gives specific tips on how a privately paid case manager and independent living instructor can assist adult patients with Fetal Alcohol Syndrome/Fetal Alcohol Effects. (from the chapter) Topics discussed include: guardianship and housing; financial management; immediate gratification/impulse control; forgetfulness, routine, and generalization; and socialization. [PsycINFO] A demonstration classroom for young children with FAS. Tanner-Halverson, P. In: The challenge of Fetal Alcohol Syndrome: Overcoming secondary disabilities. Streissguth, Ann (Ed); Kanter, Jonathan (Ed). (1997), (pp. 78-88). Abstract Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 50 (from the preface) The author describes techniques developed for early intervention within the classroom setting over the past 6 yrs when she ran a demonstration classroom for young children (6-9 yr old males) with Fetal Alcohol Syndrome/Fetal Alcohol Effects which began with a small pilot program from the Arizona State Department of Education. Ss exhibited slow academic gains and disruptive behavior when entering the demonstration classroom. [PsycINFO] Development of the FAS Diagnostic and Prevention Network in Washington State. Clarren, S. & Astley, S. In: The challenge of Fetal Alcohol Syndrome: Overcoming secondary disabilities. Streissguth, Ann (Ed); Kanter, Jonathan (Ed). (1997), (pp. 40-51). Abstract (from the preface) The authors present a comprehensive report on how they developed a fetal alcohol diagnostic and prevention network in Washington State that is underway at 7 sites, serving the Fetal Alcohol Syndrome (FAS) diagnostic and prevention needs of communities. Developing these clinics within a community context where local professionals are involved at the outset in the diagnostic examination and recommendations means that the diagnosis leads directly to workable intervention and treatment recommendations. Experience with the 1st 511 patients (0.3-46.3 yrs old) evaluated at the Washington clinic site is described as well as methods for development, funding and staffing of such statewide networks. [PsycINFO] "If It Burns Going Down...": How Focus Groups Can Shape Fetal Alcohol Syndrome (FAS) Prevention Branco, E-I. & Kaskutas, L-A. Substance Use and Misuse; 2001, Vol 36 (3), 333-345. Abstract Despite public health campaigns & clinical interventions that encourage women to abstain from alcohol during pregnancy, some women continue to drink while pregnant. To provide a more in-depth understanding of how at-risk women regard - & emotionally react to - warnings about drinking alcohol during pregnancy, we conducted focus groups in 1997 with 11 pregnant & recent postpartum Native American & African American women in Los Angeles, CA. The main objective of these groups was to uncover relevant aspects of women's beliefs & opinions about drinking during pregnancy that may not have been elicited by other research instruments. Results would then be used to shape a large survey of pregnant at-risk women. Analysis of the transcripts revealed three emergent themes, which had the greatest impact on our subsequent survey. These were women's exposure to & perceived believability of messages, their perception of risk associated with Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 51 drinking, & the barriers to cutting down on alcohol consumption during pregnancy. Questions added to our survey instrument because of these findings included whether women think that some alcohol beverages are safer to drink than others; how they value cutting back alcohol use; their views on the irreversibility of fetal alcohol syndrome; & what pressures they feel from peers & family to drink during pregnancy. Given the small sample size associated with focus groups, these results cannot be generalized to larger populations; however, these women's words revealed important underlying issues & barriers that should be considered in studying & intervening with larger representative samples. [Sociological Abstracts 1986-2002/12] Findings of a Pilot Study of Motivational Interviewing with Pregnant Drinkers. Handmaker, N.S; Miller, W.R..; Manicke, M. Journal of Studies on Alcohol; 1999, 60, 2, Mar, 285-287. Abstract Cost-effective interventions are needed for counseling pregnant drinkers to reduce risk of fetal alcohol effects. Described here is a pilot study of a motivational interviewing intervention in which 42 pregnant women in NM who reported alcohol consumption participated. Following a comprehensive alcohol use assessment, subjects (Ss) were randomly assigned to receive either written information about risks related to drinking during pregnancy or a 1-hour motivational interview - an empathetic, client-centered, but directive session focusing on the health of the participant's unborn baby. At the 2-month follow-up, all 34 women (81%) who remained in the study showed significant reductions in alcohol consumption & intoxication, but these reductions were greater among Ss who had received the test intervention. Motivational interviewing shows promise as a specific intervention for reducing drinking among pregnant women who are at greatest risk. [Sociological Abstracts 1986-2002/12] Prevention of Alcohol Abuse-Related Birth Effects-I. Public Education Efforts Abel, .E.L. Alcohol-and-Alcoholism; 1998, 33, 4, July-Aug, 411-416. Abstract After considering the relevant literature, it is contended that universal public education efforts will only be effective in reducing fetal alcohol abuse syndrome & alcohol-abuserelated birth defects if they focus on the cause of these disorders, which is alcohol abuse rather than the currently open-ended message that any amount of alcohol consumption during pregnancy constitutes a danger to an unborn child. This argument lays the Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 52 groundwork for an alternative & more pragmatic prevention strategy set forth in Part II (1998). [Sociological Abstracts 1986-2002/12] Protecting fetuses from certain harm. Abel EL. Politics Life Sciences. 1998 Sep;17(2):113-7. Abstract Deborah Mathieu's proposal for state intervention in the lives of pregnant substance abusers in order to prevent serious harm to their future children sparked a lively debate in this journal. The present discussion characterizes the three main arguments offered against her proposal as (a) the "uncertainty principle"--the inability to predict which fetuses will be affected, (b) the "father factor"--gender bias with respect to prenatal damage, and (c) "critical periods"--the vulnerability of the embryo/fetus at different times of pregnancy. Each of these arguments is examined in the specific context of fetal alcohol syndrome (FAS). Since the birth of a child with FAS is a virtual certainty if a woman has previously given birth to a child with FAS, since no father has ever sired a child with FAS unless his spouse is an alcoholic, and since the most damaging effects are those associated with exposure throughout and especially late in pregnancy, none of the arguments offered against Mathieu's proposal are relevant in this particularly narrow set of circumstances. While Mathieu's proposal seems pertinent in this situation, her proposal would be even more effective if modified as suggested here. [Pubmed] Diagnosing Moral Disorder: The Discovery and Evolution of Fetal Alcohol Syndrome Armstrong, E..M. Social-Science-and-Medicine; 1998, 47, 12, Dec, 2025-2042. Abstract Investigates the process by which a cluster of birth defects associated with exposure to alcohol in utero came to be a distinct medical diagnosis, focusing on the first 10 years of the medical literature on fetal alcohol syndrome (FAS) following its "discovery" in 1973 by a group of US dysmorphologists who published the first case reports & coined the term. The nature of the diagnosis & its salient symptoms were determined collectively over time by the medical profession as a whole. The natural history of the diagnosis in the US is traced through five stages: introduction, confirmation & corroboration, dissent, Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 53 expansion, & diffusion. FAS serves as an example of the social construction of clinical diagnosis; moral entrepreneurship plays a key role, & the medical literature is infused with moral rhetoric, including passages from classical mythology, philosophy, & the Bible. FAS is a moral, as well as a medical diagnosis, reflecting the broader cultural concerns of the era in which it was discovered, including a greater awareness of environmental threats to health, the development of fetal medicine, an emphasis on "the perfect child," & a growing paradigm of maternal-fetal conflict. [Sociological Abstracts 1986-2002/12] Prenatal alcohol exposure: advancing knowledge through international collaborations. Riley EP, Guerri C, Calhoun F, Charness ME, Foroud TM, Li TK, Mattson SN, May PA, Warren KR. Alcohol Clin Exp Res. 2003 Jan;27(1):118-35. Abstract Fetal alcohol syndrome (FAS) is a major public health issue that is evident on an international scale. The current article summarizes a meeting that was held in Valencia, Spain, in September 2001, that reviewed ongoing international collaborations and the prospects for new collaborative research. The attendees represented nine different countries and many different specialties. Following overviews of existing international collaborations in South Africa, Russia, and Chile, a number of topics for future work were discussed. Issues related to the diagnosis of FAS, its prevalence and how measures might be enhanced and standardized were presented, as obtaining consistency across populations is of prime importance. Another session discussed the current state of basic research and how collaborations in this area might be initiated. The neurobehavioral profile of FAS and how work in this area could be advanced and interpreted in light of findings with different populations generated considerable discussion. There was a review of brain imaging data in FAS and how this might be utilized in assisting the diagnosis of FAS and alcoholrelated neurodevelopmental disorder (ARND). A presentation on the utilization of international collaborations in defining the role of genetics in the etiology of FAS was included. Finally, issues related to the prevention of FAS and how these issues might be modified based upon different populations were presented. International collaborations provide a wealth of resources for the study of FAS, and it was hoped that this meeting might better enhance the work ongoing in this area, and provide opportunities for future work. [Pubmed] Prevention of Alcohol Abuse-Related Birth Effects-I. Public Education Efforts Abel, E.L. Alcohol and Alcoholism, 1998, 33, 4, July-Aug, 411-416. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 54 Abstract After considering the relevant literature, it is contended that universal public education efforts will only be effective in reducing fetal alcohol abuse syndrome & alcohol-abuserelated birth defects if they focus on the cause of these disorders, which is alcohol abuse rather than the currently open-ended message that any amount of alcohol consumption during pregnancy constitutes a danger to an unborn child. This argument lays the groundwork for an alternative & more pragmatic prevention strategy set forth in Part II (1998). [Sociological Abstracts 1986-2002/12] Prevention of Alcohol Abuse-Related Birth Effects-II. Targeting and Pricing Abel, E.L. Alcohol and Alcoholism, 1998, 33, 4, July-Aug, 417-420. Abstract It is argued that current public health measures to reduce the occurrence of fetal alcohol abuse syndrome & alcohol-abuse-related birth effects have been ineffective because they target alcohol consumption, rather than alcohol abuse. It is contended that the most effective public health strategy entails a combination of more specific public health messages that target alcohol abuse, coupled with higher taxes on alcohol beverages. Although alcohol consumption by alcohol abusers has been thought to be inelastic to price changes, recent studies have found that both heavy consumption & binge drinking are sensitive to alcohol price changes, & price elasticities are relatively high for heavy drinkers aware of the consequences of their drinking. Although price increases may have a disproportionate impact on lower socioeconomic groups, it is concluded that they are justifiable from both utilitarian & categorical imperative perspectives. [Sociological Abstracts 1986-2002/12] Treatment Programming for Alcohol and Drug-Dependent Pregnant Women Finkelstein, N. International Journal of the Addictions; 1993, 28, 13, Nov, 1275-1308. Abstract In light of national concern regarding the problem of alcohol & drug use during pregnancy, many agencies are seeking guidance in establishing services for pregnant women. A review of relevant research suggests that programs providing comprehensive, coordinated, & holistic treatment are better able to draw pregnant women into care & treat them more effectively. An overview of written guidelines & protocols for treating pregnant chemically dependent women is presented, including an elaboration of guiding Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 55 principles for care. Unresolved policy issues are identified, & recommendations made for future research directions. [Sociological Abstracts 1986-2002/12] Substance Abuse by Pregnant Women: A Survey of Iowa's Treatment Providers. Butler, M.A.; Saunders, J.A.; Saunders, E.J. Alcoholism Treatment Quarterly, 1993, 10, 1-2, 157-169. Abstract Presents findings from a statewide survey of treatment providers (N = 50) in IA questioned about the treatment programs for pregnant substance abusers. Providers were asked about the incidence of pregnant women seeking treatment, drugs of preference of pregnant women, & services offered these clients. A call is made for treatment approaches that recognize the special needs of pregnant women. [Sociological Abstracts 19862002/12] Treatment issues for alcohol- and drug-dependent pregnant and parenting women. Finkelstein, N. Health & Social Work. Vol. 19(1) Feb 1994, 7-15. Abstract Research suggests that programs that provide coordinated, comprehensive, and familycentered care are better at attracting pregnant and parenting substance-abusing women into treatment and provide more effective treatment. The author examines the history of substance abuse treatment for women; identifies barriers to treatment access; and explores the socioeconomic, clinical, and systemic issues in the treatment of alcohol- and drugdependent women. Special attention is given to the effects of substance abuse on women's relationships as daughters, partners, and parents and to its role in violence against women. [PsycINFO] A comparison of pregnant women presenting for alcohol and other drug treatment by CPS status. Hohman M.M., Shillington A.M., Baxter H.G. Child Abuse Negl. 2003 Mar;27(3):30317. Abstract Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 56 OBJECTIVE: The purpose of this study was to describe the demographic, substance use, and treatment variables of alcohol and other drug (AOD) treatment seeking pregnant women. This study also compared women on these variables based on Child Protective Service (CPS) status. METHOD: Secondary data of all pregnant women with at least one child entering all publicly funded AOD treatment programs (N=678), in a southwest county, over a 3-year period were analyzed to examine the differences between pregnant women also involved with CPS and those not involved with CPS. RESULTS: Pregnant women reporting CPS involvement were similar to non-CPS women on demographic variables but differed on drug use and treatment variables. CPS women were more likely to report marijuana use as their primary problem drug, be mandated to treatment, attend day treatment and be released from treatment unsatisfactorily compared to the non-CPS pregnant women. Those without CPS involvement were more likely to report cocaine or crack as their primary drug, attend outpatient treatment and be found to have a satisfactory release from treatment compared to those with CPS involvement. Results from the multiple logistic regression analysis found that the significant predictors of CPS involvement were mandated status and unsatisfactory treatment release. CONCLUSIONS: Differences in treatment outcomes may be based on AOD agencies' difficulty in working with mandated clients and/or with the multiple demands placed by CPS on clients as part of their treatment plans. Further research is needed to determine reasons for CPS clients' high failure rates in AOD treatment. [PubMed] Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 57 3.3 Surveillance / Screening A multiple source methodology for the surveillance of fetal alcohol syndrome--The Fetal Alcohol Syndrome Surveillance Network (FASSNet). Hymbaugh, K.; Miller, L.A.; Druschel, C.M.; Podvin, D.W.; Meaney, F.J.; Boyle, C.A.; The FASSNet Team. Teratology. 66 Suppl 1:S41-9, 2002. [Medline] Implementation of substance use screening in prenatal clinics. Li, C.; Olsen, Y. Kvigne, V. & Welty, T. South Dakota Journal of Medicine. 52(2):59-64, 1999 Feb. Abstract BACKGROUND AND OBJECTIVES: To reduce women's consumption of alcohol and other drugs during pregnancy, the Department of Epidemiology for the Aberdeen Area Indian Health Service (AAIHS) promoted a maternal substance use screening program for prenatal clinics in 1992. This report describes the adherence to the screening protocol at AAIHS facilities and barriers to such screening. METHODS: Prenatal clinic staff members at 20 AAIHS health care facilities were surveyed to determine the extent of prenatal substance use screening and the barriers to its implementation. The medical records of a random sample of 235 women who sought prenatal care at five hospitals were reviewed to determine whether prenatal clinic staff adhered to the screening protocol. RESULTS: Of the 20 health care facilities, 13 (65%) had implemented the screening. The major barriers to implementing screening were lack of training in prenatal substance use screening and lack of clinic staff designated to administer the screening protocol. Though not statistically significant, our data suggest that women not administered the screening questionnaire were more likely to be multiparous (prevalence ratio = 2.1; 95% confidence interval = 0.9, 4.5). CONCLUSIONS: To improve screening of pregnant women for substance use, prenatal clinic staff members should address administrative barriers and assess adherence of health care providers and patients to the screening protocol. Training of prenatal clinic personnel is essential to implement optimal maternal substance use screening in prenatal clinics. [Medline] Title Fetal alcohol syndrome in Alaska, 1977 through 1992: an administrative prevalence derived from multiple data sources. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 58 Egeland, G.M., Perham-Hester, K.A.; Gessner, B.D.; Ingle, D.; Berner, J.E.; Middaugh, J.P. American Journal of Public Health. 88(5):781-6, 1998 May. Abstract OBJECTIVES: The prevalence and characteristics of fetal alcohol syndrome cases and the usefulness of various data sources in surveillance were examined in Alaska to guide prevention and future surveillance efforts. METHODS: Sixteen data sources in Alaska were used to identify children with fetal alcohol syndrome. Medical charts were reviewed to verify cases, and records were reviewed to provide descriptive data. RESULTS: Fetal alcohol syndrome rates varied markedly by birth year and race, with the highest prevalence (4.1 per 1000 live births) found among Alaska Natives born between 1985 and 1988. Screening and referral programs to diagnostic clinics identified 70% of all recorded cases. The intervention program for children 0 to 3 years of age detected 29% of ageappropriate cases, and Medicaid data identified 11% of all cases; birth certificates detected only 9% of the age-appropriate cases. CONCLUSIONS: Our findings indicate a high prevalence of fetal alcohol syndrome in Alaska and illustrate that reliance on any one data source would lead to underestimates of the extent of fetal alcohol syndrome in a population. [Medline] Surveillance for fetal alcohol syndrome using multiple sources -- Atlanta, Georgia, 1981-1989. Anonymous. MMWR - Morbidity & Mortality Weekly Report. 46(47):1118-20, 1997 Nov 28. Abstract Fetal alcohol syndrome (FAS) is caused by heavy alcohol consumption during pregnancy and is characterized by specific anomalies of the face; prenatal and postnatal growth deficits; and a variety of central nervous system (CNS) abnormalities, including mental retardation. Children with either full or partial FAS often incur severe and costly secondary disabilities. Despite the importance of surveillance for establishing the magnitude of FAS and in monitoring trends in the occurrence of this disease, populationbased surveillance for FAS has been difficult because the syndrome can be diagnosed only by clinical observation and often is not recognized until after the child reaches school age. Although most FAS surveillance has been based on diagnoses among newborns, most (89%) cases (full FAS and partial FAS) are diagnosed after the age of 6 years. To develop a more accurate estimate of the prevalence of FAS in a defined population, in 1997 CDC linked data from the Metropolitan Atlanta Congenital Defects Program (MACDP) and the Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) for children born in Atlanta during 1981-1989 (the most recent birth year for which data were available for 3-10-year-olds). This report presents a multipleFetal Alcohol Spectrum Disorder - International Research and Practice Inventory 59 source method for FAS surveillance that is more complete than previous methods and that enables comparison of rates between states. [Medline] Barriers to screening and counseling pregnant women for alcohol use. Miner, K.J.; Holtan, N.; Braddock, M.E.; Cooper, H. & Kloehn, D. Minnesota Medicine. 79(10):43-7, 1996 Oct. Abstract The consequences of fetal alcohol exposure are far-reaching and preventable. Health care providers are uniquely positioned to promote alcohol-free pregnancy, yet an array of factors inhibit routine screening, counseling, and referral. This descriptive, qualitative study explored experiences and perceived barriers related to prenatal screening for alcohol use. The study included eight focus groups (71 participants) and 41 key informant interviews with health care professionals representing a mix of disciplines. Nearly 40% of the providers were physicians who regularly encounter women in their practices. While most providers ask about alcohol use, few probe in depth or follow up. The findings should alert program planners and medical educators to strengthen their preventive medical and public health practices. [Medline] Surveillance for fetal alcohol syndrome in Colorado. Miller, L.A.; Shaikh, T.; Stanton, C.; Montgomery, A.; Rickard, R.; Keefer, S.; Hoffman, R. Public Health Reports. 110(6):690-7, 1995 Nov-Dec. Abstract The authors performed surveillance for fetal alcohol syndrome with an existing birth defects registry. Fetal alcohol syndrome cases were identified from multiple sources using passive surveillance and from two selected medical sites using enhanced surveillance. Between May 1992 and March 1994, a total of 173 cases were identified, and the medical records of the cases were reviewed to determine whether the cases met a surveillance case definition for fetal alcohol syndrome. Of these cases, 37 (21 percent) met either definite (28) or probable (9) criteria for fetal alcohol syndrome, 76 met possible criteria (44 percent), and 60 (35 percent) were defined as not fetal alcohol syndrome. Enhanced surveillance had the highest sensitivity for definite or probable cases, 31 of 37 (84 percent), followed by hospital discharge data, 14 of 37 (38 percent). The authors also compared birth certificate information for 22 definite or probable cases in children born between 1989 and 1992 to birth certificate information for all Colorado births for that Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 60 period. The proportion of mothers of children with fetal alcohol syndrome was statistically significantly greater (as determined by exact binomial 95 percent confidence limits) than the proportion of all mothers for the following characteristics: black race (0.23 versus 0.05), unmarried (0.55 versus 0.22), not employed during pregnancy (0.86 versus 0.43), and started prenatal care in the third trimester (0.18 versus 0.04). Surveillance for fetal alcohol syndrome can be accomplished with an existing registry system in combination with additional case finding and verification activities. Through followup investigation of reported cases, data can be gathered on the mothers of children with fetal alcohol syndrome. These data could be used to target fetal alcohol syndrome prevention programs. [Medline] Current screening instruments related to alcohol consumption in pregnancy and a proposed alternative method. Savage C, Wray J, Ritchey PN, Sommers M, Dyehouse J, Fulmer M. Neonatal Nurs. 2003 Jul-Aug;32(4):437-46. J Obstet Gynecol Abstract Because alcohol is a known teratogenic substance that negatively affects the fetus, screening for alcohol use is included in maternal child texts for nurses. They present no standard screening approach, however. In the general literature, a multitude of screening instruments exist for the purpose of detecting maternal alcohol dependence but few allow the nurse to detect fetal alcohol exposure in the absence of maternal alcohol dependence. After a comparative analysis of existing screening instruments, we concluded that the Timeline Followback method has the most utility as a screening instrument to detect fetal exposure to alcohol. The purpose of this article is to present a critical review of current screening instruments related to alcohol consumption in pregnant women and to propose the use of the Timeline Followback method as the preferred approach. [Pubmed] Application of the fetal alcohol syndrome facial photographic screening tool in a foster care population. Astley SJ, Stachowiak J, Clarren SK, Clausen C. J Pediatr. 2002 Nov;141(5):712-7. Abstract We determined the prevalence of fetal alcohol syndrome (FAS) in a foster care population and evaluated the performance of the FAS Facial Photographic Screening Tool. All children enrolled in a Washington State Foster Care Passport Program were screened for three conditions: (1) the FAS facial phenotype from a photograph, (2) evidence of brain damage with prenatal alcohol exposure from their Health and Education passport, and/or (3) other syndromes identifiable from a facial photograph. Screen-positives received Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 61 diagnostic evaluations at a FAS Diagnostic and Prevention Network clinic. The prevalence of FAS in this foster care population was 10 to 15/1000, or 10 to 15 times greater than in the general population. The screening tool performed with 100% sensitivity, 99.8% specificity, 85.7% predictive value positive, and 100% predictive value negative. We conclude that the foster care population is a high-risk population for FAS. The screening tool performed with very high accuracy and could be used to track FAS prevalence over time in foster care to accurately assess the effectiveness of primary prevention efforts. [Pubmed] Biochemical markers of alcohol use in pregnant women. Cook JD. Clin Biochem. 2003 Feb;36(1):9-19. Abstract OBJECTIVES: To describe the serious health consequences of alcohol (ethanol) use, especially as they relate to pregnancy and the development of fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE). The classic markers of alcohol exposure, including blood/breath alcohol, gamma-glutamyl transferase (gammaGT), mean corpuscular volume (MCV), hemoglobin-associated acetaldehyde (HAA) and carbohydrate deficient transferrin (CDT), are valuable and their methods of analysis are reviewed. CONCLUSIONS: Since both FAS and FAE represent two of the leading preventable causes of mental retardation and birth defects, identification of alcohol use early in pregnancy is important to avoid adverse fetal outcomes. Unfortunately, the diagnosis of FAS and FAE is usually made after birth, when alcohol damage has become irreversible and permanent. The clinical laboratory can help prevent this damage and make a valuable contribution in assessing prenatal alcohol use. The clinical utility of blood/breath alcohol, gammaGT, MCV, HAA and CDT in alcohol use identification, especially in pregnancy, is substantial. Although none of the markers singularly has adequate sensitivity and specificity for screening, their diagnostic utility increases when measured as a panel. This is especially true in detecting alcohol use in pregnancy where the presence of several positive markers was correlated with the presence of alcohol-related fetal effects. [Pubmed] Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 62 3.4 Medical (Pertaining to interventions) A survey of medication responses in children and adolescents with fetal alcohol syndrome. Coe, J.; Sidders, J.; Riley, K.; Waltermire, J.& Hagerman, R.. Mental Health Aspects of Developmental Disabilities. Vol 4(4) Oct-Dec 2001, 148-155. Abstract This paper describes the psychopharmacological interventions in patients with Fetal Alcohol Syndrome (FAS), Partial Fetal Alcohol Syndrome (PFAS) or Alcohol-related Neurodevelopmental Disorder (ARND). The pharmacological histories of patients who had a confirmed inutero exposure to alcohol and were between the ages of 3.5 and 17 yrs were collected from a chart review of children seen in a child development unit over the previous seven years. Medications were grouped under 6 categories: stimulants, alpha2presynaptic agonists, selective serotonin reuptake inhibitors, mood stabilizers, antipsychotics, and tricyclics. Twenty-two patients had 66 medications trials: 63% responded well to stimulants. 82% responded well to selective serotonin reuptake inhibitors, 88% responded well to a mood stabilizer and 83% responded well to an antipsychotic. Aggressive treatment, including medication, should beneficially influence the broad range of secondary disabilities seen in these patients. [PsycINFO] Clinical implications of a link between fetal alcohol spectrum disorder and attentiondeficit hyperactivity disorder. O’Malley, K.D. & Nanson, J. Canadian Journal of Psychiatry - Revue Canadienne de Psychiatrie. 47(4):349-54, 2002 May. Abstract OBJECTIVE: To provide an overview of the animal and human research literature on the link between fetal alcohol spectrum disorder (FASD) and attention-deficit hyperactivity disorder (ADHD). METHOD: We conducted a comprehensive literature review that addressed the history of, and current research on, fetal alcohol syndrome (FAS) and FASD, as well as that on ADHD in children. RESULTS: In animal and human research, there is emerging clinical, neuropsychological, and neurochemical evidence of a link between FASD and ADHD. CONCLUSIONS: The evidence of the link between these 2 conditions has implications for clinical management. The clinical quality of ADHD in children with FASD often differs from that of children without FASD. For children with FASD, ADHD is more likely to be the earlier-onset, inattention subtype, with comorbid developmental, psychiatric, and medical conditions. Children with FASD are commonly Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 63 not mentally retarded but present complex learning disabilities, especially a mixed receptive-expressive language disorder with deficits in social cognition and communication (reminiscent of sensory aphasia and apraxia), working memory problems, and frequently, a mathematics disorder. Comorbid psychiatric conditions include anxiety, mood, conduct, or explosive disorders. As well, cardiac, renal, or skeletal problems are more likely to be present. Because these children have a disturbance in brain neurochemistry, or even brain structure (that is, in the corpus callosum), their response to standard psychostimulant medication can be quite unpredictable. [Medline] The role of acetaldehyde in pregnancy outcome after prenatal alcohol exposure. Hard, M.L., Einarson, T.R., Koren, G. Therapeutic Drug Monitoring. 23(4):427-34, 2001 Aug. Abstract It is not known why some heavy-drinking women give birth to children with alcohol-related birth defects (ARBD) whereas others do not. The objective of this study was to determine whether the frequency of elevated maternal blood acetaldehyde levels among alcoholics is in the range of ARBD among alcoholic women. MEDLINE was searched from 1980 to 2000 using the key words acetaldehyde, pharmacokinetics, and alcoholism for controlled trials reporting blood or breath acetaldehyde levels in alcoholics and nonalcoholics. Separately, using the key words fetal alcohol syndrome, epidemiology, prevalence, incidence, and frequency, articles were identified reporting ARBD incidences among the offspring of heavy drinkers. Of 23 articles reporting acetaldehyde levels in alcoholics, four met the inclusion criteria. Forty-three studies reported on the rate of ARBD in heavy drinkers, and 14 were accepted. Thirty-four percent of heavy drinkers had a child with ARBD, and 43% of chronic alcoholics had high acetaldehyde levels. The similar frequencies of high acetaldehyde levels among alcoholics and the rates of ARBD among alcoholic women provide epidemiologic support to the hypothesis that acetaldehyde may play a major role in the cause of ARBD. [Embase] Antioxidants and fetal protection against ethanol teratogenicity. I. Review of the experimental data and implications to humans. Cohen-Kerem R, Koren G. Neurotoxicol Teratol. 2003 Jan-Feb;25(1):1-9. Abstract Ethanol is the most common human teratogen, and heavy drinking during pregnancy can result in serious adverse outcomes to the fetus. The cellular mechanisms by which ethanol induces damage in utero are not well understood, while induction of oxidative stress is believed to be one putative mechanism. Our objective is to review the data of antioxidant Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 64 effects in experimental models of fetal alcohol syndrome. Prior to the description of the available experimental data, we will briefly review the mechanisms leading to ethanolinduced oxidative stress. Ethanol-induced oxidative damage to the fetus could be attenuated by a variety of antioxidants as was documented in whole animal and tissue culture studies. Experiments, retrieved from the literature search, are described and criticized. Although experimental data are still limited, the application of a treatment strategy that includes antioxidants is justified since antioxidant treatment in human pregnancy for pre-eclampsia was demonstrated to be safe and effective. The available experimental evidence and the safety of vitamins C and E in pregnancy suggest that experimental use of antioxidants in alcohol-consuming mothers should be seriously considered to reduce fetal alcohol damage. [Pubmed] Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 65 3.5 Alcoholism and Pregnancy: Social Implications related to Prevention Therapeutical characteristics of alcohol dependent women - A case study. Beutel, M. Sucht. Vol 45(5) (pp 346-350), 1999. Abstract The characteristics of the therapy of alcohol dependent women during pregnancy are presented in a case study. Only relatively few women join an inpatient rehabilitation programme for substance abuse during pregnancy. Possible causes are discussed. For many female addicts pregnancy is experienced as a psychological relief. This enables them to live without alcohol or to reduce drinking levels during pregnancy. Unfortunately this advantage becomes effective only when the woman knows about her pregnancy and that is often rather late for women with substance abuse. Pregnant women need special support during rehabilitation. They need intensive medical and gynaecological care. Psychotherapy during pregnancy is possible and effective. Especially women with serious personality disorders need special support caring for their newborn child. [Embase] 'A tempest in a cocktail glass': Mothers, alcohol, and television, 1977- 1996. Golden, J. Journal of Health Politics, Policy & Law. Vol 25(3) (pp 473-498), 2000. Abstract This article examines the portrayal of pregnancy and alcohol in thirty- six national network evening news broadcasts (ABC, CBS, NBC). Early coverage focused on white, middle-class women, as scientific-authorities and government officials warned against drinking during pregnancy. After 1987, however, women who drank during pregnancy were depicted as members of minority groups and as a danger to society. The thematic transition began before warning labels appeared on alcoholic beverages and gained strength from official government efforts to prevent fetal alcohol syndrome. The greatest impetus for the revised discourse, however, was the eruption of a 'moral panic' over crack cocaine use. By linking fetal harm to substance abuse, the panic suggested it was in the public's interest to control the behavior of pregnant women. [Embase] Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 66 Pregnant, alcohol-abusing women. Hankin, J.; McCaul, M.E.; Heussner, J. Alcoholism: Clinical & Experimental Research. Vol 24(8) (pp 1276-1286), 2000. Abstract Background: This paper reviews the literature on the identification and treatment of pregnant, alcohol-abusing women, with special emphasis on poor women who have access to treatment through Medicaid. Methods: The paper discusses the gaps and controversies in the literature and suggests five priorities for future research. Results: Studies that attempt to identify pregnant women who drink conclude that heavier drinkers enter prenatal care later than other women, that many health care providers fail to recognize alcohol abuse by pregnant women, and that research on screening techniques is still in the early stages. Treatment research suggests that comprehensive, holistic treatment approaches, as well as brief interventions and case management, have been successful in reducing prenatal alcohol use. Debate continues over whether treatment should be voluntary. Conclusions: The five areas identified as priorities for future research include (1) developing reliable and valid measures to identify alcohol abuse in pregnant women, (2) creating training programs for providers, (3) generating programs to reduce barriers to care, (4) determining which treatment programs are most successful, and (5) estimating the costs and benefits of various treatment approaches. [Embase] Thoughts on poverty and inequality. Widmer, M. Journal of Poverty, 1(2): 95-100, 1997. Abstract What is it like to be a single mother? It is like performing a high wire act with no net underneath to catch you when you fall. According to this single mother, the fall is imminent. Women arrive at single motherhood for a variety of reasons--generational poverty, unwed teen pregnancy, divorce, spousal abuse, alcoholism or drug addiction--the list is a long one. Regardless of how they arrive, when they get there it becomes a balancing act unlike any other. This essay tells of a single mother's struggles of caring for her sons with a near poverty line income. [Social Work Abstracts 1977-2003/06] Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 67 Ethnic Differences in the Substance Use Patterns of Low-Income Pregnant Women Zambrana, R.E.; Hernandez, M.; Dunkel-Schetter, C. Scrimshaw, S.C.M. Family and Community Health 1991, 13, 4, Jan, 1-11. Abstract Sociodemographic & psychological factors that distinguish pregnant women who continue to use substances from women who abstain from all substances during their pregnancy are examined, based on structured interviews conducted with a sample of 107 primiparous Afro-American, recent Mexican immigrant, & Mexican-American women attending Los Angeles County (Calif) prenatal care clinics. Information was obtained on: alcohol consumption, smoking behavior, use of hard & prescription drugs, & use of the over-the-counter (OTC) medications. Also explored were psychosocial factors & differences by ethnicity on use of substances before pregnancy: black women were more likely than recent Mexican immigrant or Mexican-American women to use all substances before pregnancy; further, Mexican-American women were less likely to use OTC medications & prescription drugs before pregnancy than recent Mexican immigrant women. However, no significant ethnic differences in substance use patterns during pregnancy were identified. In general, women who continued to use substances during pregnancy were significantly older & had not planned the pregnancy. [Sociological Abstracts 1986-2002/12] Gender Roles and Alcohol Consumption across the Transition to Parenthood. Richman, J.A.; Zeisz, J.M.; Rospenda, K.M.; Kelley, M.A. asp Association-Paper International Sociological Association (ISA). 1994. Abstract The transition to parenthood now occurs within the context of major gender-role changes involving the greatly increased labor force participation of women with young children. A substantial literature has depicted stress-related costs of both traditional & nontraditional gender-role choices of husbands & wives with young children, one being heavy drinking for stress-reduction purposes. Self-report questionnaire data were obtained from 51 married couples expecting their first child during the second trimester of pregnancy, & again 6 months following childbirth. Results are used to examine both wives' & husbands' changes in problem-related drinking, & to contrast problem- with nonproblem drinkers following parenthood with regard to role overload (competing demands from work & family roles), role deprivation (loss of the work role following parenthood), & role deterioration (decreased support from social relationships). Empirical results fail to support either the role overload or role deprivation thesis for either men or women, but are congruent with a role deterioration model.[Embase] Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 68 Issues of Violence and Abuse among Low-Income, Substance-Involved Pregnant Women Zahnd, E.G.; Klein, D. asp Association-Paper, Society for the Study of Social Problems (SSSP). 1994. Abstract To determine the extent of violence permeating the lives of low-income, pregnant women who are problem alcohol or other drug (AOD) users, variables related to violence & abuse were examined among 401 such women & adolescents in 2 CA counties, with a comparison group of 746. About half the respondents (Rs) reported childhood problems, most frequently, a family member's AOD use closely followed by a family member's abuse or discipline, & fighting or violence. This response was more frequent among heavier AOD users. About half the Rs want their children to be disciplined differently than they were, wanting more talk, patience, & understanding/less punishment, strictness, & violence, which many connected to drug use or dealing. Discussing their own AODrelated problems, Rs frequently mentioned getting into a serious argument or fight. These findings show that violence strongly affects such women's lives, both as part of their earlier & childhood experiences, & in the context of their everyday neighborhood experiences. [Embase] Individual Differences in Perceived Riskiness of Drinking in Pregnancy: Antecedents and Consequences Testa, M.; Reifman, A. Abstract Empirically explores (1) whether differences in perceived riskiness of alcohol consumption during pregnancy were related to self-reported alcohol consumption among a community sample of 159 pregnant women in Buffalo, NY, & (2) the impact of prior experiences on risk perceptions, focusing on previous pregnancy experiences & alcoholrelated problems. Structural equation modeling revealed that perceived riskiness of drinking during pregnancy was lower among women who had previously given birth to a healthy child & among women with greater numbers of previous alcohol problems. Prior adverse pregnancy experience did not predict perceived risk. Perceived risk negatively predicted actual alcohol consumption during pregnancy, suggesting that previous healthy pregnancy experiences & alcohol problems increase drinking in pregnancy indirectly through perceived risk. A direct positive effect from previous alcohol problems to drinking in pregnancy also was observed. Findings suggest that risk perceptions play a role in drinking behavior among pregnant women & help to illuminate the relationship Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 69 between parity & alcohol consumption. Interventions designed to reduce drinking among pregnant women, which have generally relied on providing information, may be improved by considering the impact of previous experiences & addressing erroneous beliefs. [Embase] Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 70 4. Programs – Prevention and Intervention Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 71 4.1 Partnership to Prevent Fetal Alcohol Syndrome (http://prevention.samhsa.gov/faspartners/default.asp) The Partnership to Prevent Fetal Alcohol Spectrum Disorders was established by the Substance Abuse and Mental Health Services Administration's (SAMHSA), Center for Substance Abuse Prevention (CSAP), in July 2001. The goal of the Partnership is to unite communities nationwide in a public health response to prevent Fetal Alcohol Spectrum Disorders (FASD). The Partnership aims to empower mothers to deliver healthy babies by encouraging women who are planning a pregnancy or already pregnant to avoid alcohol. It also strives to foster social support among their significant others. CSAP recognizes that prevention works best at the community level. With a network of local partners who understand the needs of specific areas, CSAP will initially implement the program in four community sites and later share these models with the national public health community. Community Sites CSAP will initially implement the program in four community sites and later share these models with the national public health community. The lead organization in each community site will work with CSAP to coordinate partnership development at a local level. Doña Ana County, New Mexico Lead Organization Ben Archer Health Center 255 Highway 187, P.O. Box 370 Hatch, NM 87937 Tel: 505-267-3088, Fax: 505-267-4606 Web: http://www.zianet.com/bahcmed/HATCHSTAFF.html Contact: Mary Alice Garay, Executive Director Contact: Trudy G. Gallegos, BCH The Ben Archer Health Center (BAHC) was established in 1972. Its mission is to significantly improve the health status of its population through the prevention of illness, the promotion of health education, and the provision of quality primary care, access to the underserved and a strong commitment to chronic disease and pain management. BAHC is fully accredited by the Joint Commission on Accreditation of Health Care and is the only primary care provider for Northern Doña Ana County. East Baton Rouge Parish, Louisiana Lead Organization Capital Area Human Services District (CAHSD) Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 72 4615 Government Street, Baton Rouge, LA 70806 Tel: 225-922-2700, Fax: 225-925-1987 Web: http://www.cahsd.org Contact: Jan Kasofsky, Ph.D., Executive Director Contact: Debby Cartwright, BCSW, Director of Prevention and Outreach CAHSD provides the publicly funded mental health, developmental disabilities, and addictions services in a 7-parish region. Some of the services pertinent to the FASD Partnership are: child/adolescent prevention and treatment, adult treatment including detox, education groups, outpatient treatment, residential treatment for women with dependent children, inpatient treatment, addictions screening for pregnant women, and treatment for sexual abuse, dual diagnosis, and gambling addiction. Erie County, New York Lead Organization Erie County Council for the Prevention of Alcohol and Substance Abuse (ECCPASA) 1625 Hertel Avenue, Buffalo, NY 14216 Tel: 716-831-2298, Fax: 716-831-9580 Web: http://www.eccpasa.info Contact: Jan Duffey, Executive Director Contact: Helen Weinstein ECCPASA is an affiliate member of the National Council of Alcoholism and Drug Dependence (NCADD) and is committed to building safe, healthy and resilient communities free from alcohol and drug use. ECCPASA is a proven provider of quality prevention and intervention services utilizing research-based strategies and programs. Sumter County, South Carolina Lead Organization The Prevention Center, a division of the Sumter Commission on Alcohol and Drug Abuse (SCADA) 115 North Harvin Street, 4th Floor P.O. Box 39, Sumter, SC 29150 Tel: 803-778-2835, Fax: 803-778-4017 Web: http://www.preventioncenter.netfirms.com Email: thepreventioncenter@yahoo.com Contact: Glenn Peagler, M.Ed., CSPP, Director of Prevention Contact: Patricia A. Colclough, MS, CPP, Women's Issues Coordinator Site Visit: May 30-31, 2002 The Prevention Center, a division of the Sumter Commission on Alcohol and Drug Abuse in South Carolina, provides a full range of prevention services, including presentations, trainings/workshops, and Outdoor Adventure (ropes). Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 73 4.2 Fetal Alcohol Education Program (FAEP) Boston University School of Medicine 1975 Main Street Concord, MA 01742 Phone: 978-369-7713 Fax: 978-287-4993 The Fetal Alcohol Education Program is dedicated to research and education for the prevention, identification and treatment of alcohol-related neurodevelopmental disorders. They have a number of educational materials available for sale, including two teaching packages, one for professional education entitled Alcohol, Drugs, and the Fetus: A Teaching Package (84 slides, a 65-page manual) and Here's to Healthy Babies for education of parents and community groups (call or write for details). They have also developed a handbook for parents, FAS: Parent and Child ($7.50 per single copy; bulk rates available), and make a reprint list available. Call or write for further information. When time permits, FAEP will do brief consultation and referral. They also maintain a list of families interested in participating in research studies. 4.3 The National Organization on Fetal Alcohol Syndrome [NOFAS] 418 "C" Street, NE Washington, DC 20002 1-800-666-6327 202-785-4585 Fax: 202-466-6456 Web: http://www.nofas.org/ NOFAS is committed to raising public awareness about Fetal Alcohol Syndrome, the leading cause of mental retardation, and seeks to implement innovative ideas in prevention, education, intervention and advocacy. NOFAS takes a multicultural approach to prevention and healing among individuals, families and communities, because FAS touches people in all walks of life. NOFAS publishes a quarterly newsletter, Notes on NOFAS, which is free, and has brochures available. They also have a state-by-state resource directory developed in conjunction with the Centers of Disease Control and Prevention, that can be purchased or can be requested from their own state. This comprehensive listing of services contains valuable information for physicians, health care workers, FAS program counselors, teachers, parents and others seeking quick and accurate information NOFAS sponsors community seminars, and a national conference; call for further details. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 74 4.4 International Birth Defects Information Systems (IBIS) http://www.ibis-birthdefects.org/start/index.htm Provides: Access to a not-for-profit information consortium. A Web site dedicated to Birth Defects, Genetics and Teratology. Information for patients, public, professionals and investigators. Sources of information selected by specialists. A conduit for experts to strengthen the contents of IBIS. A global reach toward multi-lingual and culturally diverse sources. A medium for authors/owners to disseminate their works A medium for contributions to prevent and ameliorate birth defects 4.5 National Council on Alcohol and Drug Dependence, Inc. Juneau Affiliate 211 Fourth St. Suite 102 Juneau, AK 99801 Ph: (907) 463-3755 | Fax: 463-2539 Fetal Alcohol Syndrome (FAS) prevention: Adolescents who are referred to the Juvenile ASAP department take part in a FAS prevention program. These youth have been charged by the Alaska court system with some type of high-risk behavior such as minor consumption of alcohol or underage smoking. Upon their initial appointment with ASAP, the youth takes a 10 question pre-test about fetal alcohol exposure and its effects. He and the ASAP staff person go over the answers so the teen has correct information. The teen and his parent then watch a 10-minute video about FAS and take a post-test. The goal of the program is to educate minors who are engaging in high-risk behaviors about Fetal Alcohol Syndrome and to ultimately lower its incidence. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 75 4.6 Statewide Fetal Alcohol Syndrome Prevention Program 1650 Yale Blvd SE Albuquerque, NM 87106 Principal Investigator Jerome Romero 505-925-2302 Fax – 505-925-2313 Aggie@unm.edu The Fetal Alcohol Syndrome Prevention Project was established in 1996. The New Mexico Strategic Plan for Disability Prevention recognized the need for a Statewide Lead Agency to coordinate the FAS/ARBD prevention efforts in New Mexico. This coordination includes; public education campaigns, community projects, social change and advocacy efforts at multiple levels of intervention. A statewide FAS Advisory Committee provides guidance to the project coordinator. The Committee is comprised of individuals who have an interest in FAS prevention and women having healthy pregnancies. The project staff have expertise in FAS/ARBD prevention and intervention, experience in primary and secondary prevention programs, media marketing, program development, continuing education for health and human services providers, educators and the community. The program is funded by the Disability and Health Program, New Mexico Department of Health. 4.7 Colorado Area Health Education Centre (AHEC) Program http://www.uchsc.edu/ahec/fas/index.htm The Colorado AHEC system is a community/academic partnership involving the University of Colorado Health Sciences Center (UCHSC) with its five schools (Medicine, Dentistry, Nursing, Pharmacy, Graduate) and five AHEC’s, each serving a designated region of the state. Four of the AHEC's are rural, community-based independent organizations. The fifth AHEC is predominantly urban, with a community-based advisory board. This long-standing partnership has generated numerous linkages between academic resources and local health care facilities and providers, assuring that a variety of educational and support services are available throughout Colorado. Fetal Alcohol Syndrome Prevention Program Strategies and Goals Information and Dissemination - to increase overall awareness of the nature and scope of the FAS/ATOD problem and effective strategies to prevent the problem. Education - to increase the knowledge, skills of individuals who work in high-risk populations in the area of effective FAS/ATOD prevention. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 76 Community Based Process - to increase FAS/ATOD knowledge and problem identification and referral skills of health and human service providers who work with high risk individuals and to develop/strengthen the capacity of local community groups/agencies to address FAS/ATOD issues in their area and to increase the knowledge, skills of individuals who work in high risk populations in the area of effective FAS/ATOD prevention, and to increase overall knowledge of effective FAS/ATOD policies and help change current attitudes in the communities. 4.8 National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect http://www.cdc.gov/ncbddd/fas/taskforce.htm The National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect is a congressionally mandated task force charged with: Advising all governmental agencies, academic bodies, and community groups that conduct or support fetal alcohol syndrome and fetal alcohol effect research, programs, and surveillance, and Meeting the general needs of populations actually or potentially impacted by fetal alcohol syndrome and fetal alcohol effect. Purpose The Secretary is mandated under Section 399H of the Public Health Service Act, as amended (42 U.S.C. Section 280f, as added by Public Law 105-392), to establish a National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect: (1) to foster coordination among all governmental agencies, academic bodies, and community groups that conduct or support fetal alcohol syndrome and fetal alcohol effect research, programs, and surveillance; and (2) to otherwise meet the general needs of populations actually or potentially impacted by fetal alcohol syndrome and fetal alcohol effect. Function The National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect shall (a) advise Federal, State, and local programs and research concerning fetal alcohol syndrome (FAS) and fetal alcohol effect (FAE), including programs and research concerning education and public awareness for relevant service providers, school-age children, women at risk, and the general public, medical diagnosis, interventions for women at risk of giving birth to children with FAS and FAE, and beneficial services for individuals with FAS and FAE and their families; (b) coordinate its efforts with the Interagency Coordinating Committee on Fetal Alcohol Syndrome of the Department of Health and Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 77 Human Services; and (c) report, on a biennial basis, to the Secretary and relevant committees of Congress on the current and planned activities of the participating agencies. 4.9 Brief Alcohol Intervention: The Healthy Moms Project Faculty of Medicine, University of Wisconsin Funding: National Institute on Alcohol Abuse and Alcoholism Michael Fleming, MD – Principal Investigator http://www.fammed.wisc.edu/research/alcoholintervention.html Abstract: Background: The prevention of Fetal Alcohol Syndrome and fetal alcohol exposure is an important national priority. A 1995 national survey conducted by the Centers for Disease Control estimates that as many as 140,000 children born in the US are exposed to potentially harmful effects of alcohol during fetal development (3.5% of 4 million live births). One prevention strategy is to establish screening and intervention procedures that can be administered in primary care settings to womn who are drinking above recommended limits. Goal: The study is designed to test the efficiency of a primary care-vased brief intervention for women who resume heavy drinking during the post-partum period who used alcohol during their last pregnancy. The ultimate goal is to reduce alcohol use, alcohol related harm, and fetal alcohol exposuer in subsequent pregnancies. Method: The trial will utilize methods successfully employed by the PI in three brief intervention trials (Project TrEAT, Project GOAL, and an ongoing trial in Poland). Women will be asked to complete an embedded alcohol questionnaire (Health Screening Survey) whil seeing their obstetrician for a routine post partum visit. Women who screen positive for heavy drinking (>7 drinks/week in the past month, 4 or more drinks/occasion, or two or more positive responses on the T-ACE) will be invited by a researcher to participate in a health interview. Women who meet eligibility criteria for the trial will be randomized to a usual care control group or a physician/nurse brief intervention group. The intervention will consist of two 10-15 minute physician/nurse visits and two 2-minute follow-up phone calls. All subjects will be contacted at 6, 12, 18 and 24 months by telephone to assess outcomes of interest which include alcohol use, quality of life, mental health problems, accidents, and heath care utilization. Power analysis suggests that 250 women in each arm of the trial will have sufficient power to detect a difference for the main outcome variables of interest. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 78 Significance: The proposed study would significantly increase our understanding of how to reduce alcohol use in post partum patients and how to limit FAS and fetal alcohol exposure. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 79 5. Funding Opportunities – FASD/FAE Prevention Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 80 5.1 Maternal Alcohol Use & Prenatal Alcohol Exposure Prevention/Intervention Initiative Minnesota Department of Health Division of Family Health-Fetal Alcohol Syndrome Request for Proposals (RFP) for Maternal Alcohol Use and Prenatal Alcohol Exposure Prevention/Intervention Initiative To: All Interested Applicants Date Due: September 12, 2003 http://www.health.state.mn.us/divs/fh/FAS/FAS-rfp2003.html NOTICE IS HEREBY GIVEN that the Minnesota Department of Health (MDH), Family Health Division is requesting proposals from community organizations and coalitions to collaborate on strategies and activities to prevent maternal alcohol use and prenatal alcohol exposure that could result in fetal alcohol syndrome and alcohol related effects. The Minnesota Department of Health plans to fund at least one project in each of the following categories: (1) maternal alcohol screening; (2) interventions with women at high-risk; (3) community prevention and integration partnerships; and (4) interventions with adolescents and adults with fetal alcohol syndrome and alcohol related effects. Eligible applicants include Community Boards of Health, non-profit health and human service organizations, tribal governments and entities, health care organizations, and other interested agencies. $850,000 in State funds are available for each year of this grant initiative. The two-year grants will begin on or about January 1, 2004, and will be subject to annual review by MDH. The completed proposal must be submitted no later than 4:30 p.m. on Friday, September 12, 2003 to Sheila Blackman at the Minnesota Department of Health, Family Health Division, 85 E 7th Place, Suite 400 P.O. Box 64882, St. Paul, MN 55416-0882. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 81 5.2 March of Dimes - Biomedical research funding http://www.marchofdimes.com/professionals/691_1447.asp RFP for 2004 Research Program We invite all qualified scientists with faculty appointments or the equivalent, at universities, hospitals and research institutions, to submit applications for research grants directed at the prevention of birth defects. Research subjects appropriate for support by the March of Dimes include basic biological processes governing development, genetics, clinical studies, studies of reproductive health, environmental toxicology, and social and behavioral studies. Please note: In Social and Behavioral Sciences, we are interested in applications proposing research that advances our understanding of – and therefore our ability to prevent – the cognitive and behavioral risks that affect outcomes of pregnancy, the perinatal period, and subsequent child development. Because change in behavior is an important component of several of our campaigns, we are interested in studies that address this method of prevention. Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 82 6. FASD Family and Practitioners Resources Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 83 6.1 Fetal Alcohol Syndrome Family Resource Institute (FAS*FRI) http://www.fetalalcoholsyndrome.org/ PO Box 2525 Lynnwood, Washington, USA 98036 (253) 531-2878 Fax: (253) 640-9155 E-mail: vicfas@hotmail.com The Fetal Alcohol Syndrome Family Resource Institute is dedicated to the preservation of families through the identification, understanding and compassionate care of individuals disabled by prenatal alcohol exposure. The institute helps by sharing the grief, healing the pain, and directing parents to agencies and programs that will give hope and help. FAS*FRI has local support groups with a directory that is included in their information packet and will give assistance to anyone wishing to start a group in their locality. The Institute publishes a quarterly newsletter, FAS Times, that in included in membership fees, and brochures including, "Fetal Alcohol Syndrome," "Help Hope Healing for Birth Parents of Children with FAS/FAE," and "We Love Children with Special Needs, and We Vote." The Institute offers a new parent information packet that contains, Fetal Alcohol Fact Sheet, a copy of the newsletter, letters from parents and a listing of regional support resources. They have a reading list of articles and books that are available to members and collect information on physicians and researchers who treat/study the condition. This information is made accessible to members. They have a state wide 800 referral line. 6.2 Family Empowerment Network: Supporting Families affected by FAS/E http://www.familyvillage.wisc.edu/lib_fas.htm 610 Langdon Street Room 523 Madison, WI 53703-1195 1-800-462-5254 608/262-6590 608/265-2329 (Fax) Email: fen@mail.dcs.wisc.edu Family Empowerment Network (FEN): Supporting Families Affected by Fetal Alcohol Syndrome and Fetal Alcohol Effects. FEN is an international organization serving families and professionals. They provide: free informational packets on FAS/FAE; international resource/referral directory catalogued by state/province; quaterly newsletter, the FEN Pen; extensive loan library (videos, audio training tapes, books, fact sheets, etc.); Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 84 trainings for parents and professionals; educational opportunities; annual retreat for families; and an annual national conference. FEN is a program of the University of Wisconsin-Madison, Department of Professional Development and Applied Studies. 6.3 FAS Community Resource Center Information about Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Spectrum Disorders (FASD) http://come-over.to/FASCRC/ A Web site sponsored by the Pima Council on Developmental Disabilities in Tucson, Arizona. Resources, articles, photos, and stories for students, parents, and professionals. 6.4 Educational Resources: The Arc’s Fetal Alcohol Resource Guide, online at: http://thearc.org/misc/faslist.html March of Dimes 2002 Product Catalog "Saving Babies Together" This product catalog contains FAS-related resources; other resources for alcohol, tobacco, and other drug prevention and intervention; and healthy pregnancy and baby resources. Materials listed include pamphlets, fact sheets, videos, slide shows, reports, publications, and books on pregnancy planning, healthy pregnancy, baby care, preterm labor, bereavement, prenatal care, smoking and pregnancy, parenting, caring for the new baby, the importance of folic acid during pregnancy, teen pregnancy, and perinatal and genetic data. All materials are also available in Spanish. Organization: March of Dimes Birth Defects Foundation Year: 2002 Format: Resource Target Audience: Families, women of childbearing age, pregnant women, prevention specialists, fathers-to-be, female teens, and social service and health care providers Availability: March of Dimes Birth Defects Foundation 1275 Mamaroneck Avenue White Plains, NY 10605 888-MODIMES (888-663-4637) TTY: 914-997-4764 Fax: 914-997-4763 Internet: http://www.marchofdimes.com/professionals/2222.asp Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 85 Cost: Free You Can Help Prevent Fetal Alcohol Syndrome and Fetal Alcohol Effects This action kit offers facts about FAS, action steps for the prevention of FAS, and valuable resource links, as well as a link to a model FAS prevention program. It includes templates for writing to politicians and liquor companies to encourage them to fund education, research, and prevention programs. Instructions are provided for starting a letter-writing campaign. Organization: League for the Prevention of Alcohol-Related Fetal Brain Injury Year: 2001 Format: Online action kit Target Audience: Families, communities, and prevention specialists and organizations Availability: Available online only. Internet: http://www.worldprofit.com/ mafas.htm Cost: Free A Mother's Choice This video examines the root causes of FAS from the perspective of an Aboriginal mother. The video provides strong messages about consuming alcohol while pregnant. The video targets Aboriginal men and women who are thinking about having a child but may still be dealing with their substance abuse problems. A discussion guide is provided with the video. Organization: Gryphon Production, Ltd. Year: 1999 Format: Video (26 minutes) Target Audience: Aboriginal families and men and women who use alcohol and are considering having a child Availability: Gryphon Productions, Ltd. P.O. Box 93009 5331 Headland Drive West Vancouver, BC Canada V7W 3CO 604-921-7627 Fax: 604-921-7626 E-mail: gryphon@telus.net Internet: http://www3.bc.sympatico.ca/ gryphon/ Cost: $148 (U.S. dollars) Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 86 Community Action Guide: Working Together for the Prevention of Fetal Alcohol Syndrome This guide is intended to support those interested in working on the prevention of FAS in communities. It provides clear, up-to-date information on FAS; interventions that work for children, youth, and adults affected by FAS; information that supports increased understanding of women's use of alcohol and other drugs; information on working with women to prevent FAS; and information on planning effective community-based initiatives to prevent FASD. Organization: British Columbia Ministry for Children and Families and British Columbia Fetal Alcohol Syndrome Resource Society Year: 1998 Format: Guide (111 pages) Target Audience: Families, community leaders, and social service professionals who work on community prevention initiatives, and prevention specialists Availability: British Columbia Ministry of Children and Family Development P.O. Box 9721 Stn. Prov. Govt. Victoria, BC Canada V8W 9S2 250-387-2023 Fax: 250-356-3007 Free download available online. Internet: http://www.mcf.gov.bc.ca/child_protection/fas/ Cost: Free Fetal Alcohol Syndrome and Effects: Stories of Help and Hope This FAS prevention video provides young people, parents, and others with the facts about FAS/ARBD and its causes. Through the stories told by parents, professionals, and adoptive parents, the viewer can come to understand the effects of alcohol abuse on children and the importance of getting help with alcohol problems. Organization: Hazelden Publishing and Education Year: 1998 Format: Video (45 minutes) Target Audience: Adolescents, parents, women of childbearing age, and pregnant women who use alcohol Availability: Hazelden Publishing and Education Pleasant Valley Road P.O. Box 176 Center City, MN 55012-0176 800-328-9000 or Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 87 Office of FAS Alaska Department of Health and Social Services P.O. Box 110609 Juneau, AK 99811-0609 907-465-3033 877-393-2287 (toll-free in Alaska) Fax: 907-465-1189 Internet: http://www.hss.state.ak.us/fas/ Cost: Contact Hazelden Publishing and Education or Alaska DHSS/Office of FAS for current pricing. Drinking and Your Pregnancy This brochure explains in simple language why pregnant women should not drink alcohol and the possible damage to their babies if they do. Organization: National Institute on Alcohol Abuse and Alcoholism, National Institutes of Health (NIH), and National Organization on Fetal Alcohol Syndrome Year: 1997 Format: Brochure (2 pages) Target Audience:Pregnant women and their families and women of childbearing age Availability: Health Resources and Services Administration Publications 888-ASK-HRSA (888-275-4772) Order by phone or online only. Publication No. MCHK040 Internet: http://www.ask.hrsa.gov/detail.cfm?id=mchk040 Cost: Free Fetal Alcohol Syndrome This brochure explains FAS, what it is, how it can be prevented, and how a mother's drinking affects her unborn child. It explains that although there is no cure for FAS, it is 100 percent preventable. The brochure lists the learning and developmental problems of FAS children, and effective strategies and discipline for them. Organization: National Organization on Fetal Alcohol Syndrome Year: 1997 Format: Brochure Target Audience: Families of pregnant women and of FAS-affected children Availability: National Organization on Fetal Alcohol Syndrome 1819 H Street, NW, Suite 750 Washington, DC 20006 Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 88 202-785-4585 or 800-66-NOFAS Internet: http://www.nofas.org Cost: Free A Layman's Guide to Fetal Alcohol Syndrome and Possible Fetal Alcohol Effects This guide answers many frequently asked questions about FAS and fetal alcohol effects (FAE), including history, causes, diagnosis, and characteristics of children with FAS/FAE at different stages of their lives. Organization: FAS/E Support Network of British Columbia Year: 1997 Format: Guide Target Audience: Families of preconceptional and pregnant women and FAS-affected adolescents and young adults and their families Availability: FAS Bookshelf, Inc. #438-6540 E. Hastings Street Burnaby, BC Canada V5B 4Z5 604-942-2024 Fax: 604-942-2041 Item No. B-105 Internet: http://www.fasbookshelf.com/buyit.html Cost: $17 The Walk of Our Grandmother: A Manual for Alaska Native Girls & Women edited by Valerie Naquin and Clarice Dickess This FAS prevention manual is written for Alaska Native girls and women. It provides messages of prevention, cultural stories, and lessons on living an alcohol- and drug-free life by following the advice of Alaskan elders. Organization: Fairbanks Native Association Year: 1996 Format: Manual Target Audience: Alaska Native girls and women and their families Availability: Office of FAS Alaska Department of Health and Social Services 150 Third Street, Suite 310 P.O. Box 110609 Juneau, AK 99811-0609 907-465-3033 877-393-2287 (toll-free in Alaska) Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 89 Fax: 907-465-1189 E-mail: fas@health.state.ak.us Internet: http://www.hss.state.ak.us/fas/Resources/default.htm Cost: Contact Office of FAS, Alaska DHSS, for current pricing and availability. 6.5 Online Resources for Practitioners Fetal Alcohol Syndrome Prevention, Minnesota Department of Health. http://www.health.state.mn.us/fas/professionalpractice.html Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 90 7. International Activities and On-line Resources Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 91 Information obtained from: Fetal Alcohol and Drug Unit, University of Washington, web: http://depts.washington.edu/fadu/ Most resources are in native language, and do not provide English translation Australia National Organisation for Foetal Alcohol Syndrome and Related Disorders. Canadian Reports cited on this page. http://users.chariot.net.au/~miers/ Brazil Consumo de álcool durante a gravidex altera a função da tireóide; http://www.emedix.com.br/not2002/02jan15acer-acd-alcool.shtml Síndrome Alcoólica Fetal; an excellent article on SAF which includes many pictures. http://200.152.193.252/novosite/complicacoes_gravidez_sindrome.htm Central America El consumo de alcohol durante el embarazo; http://www.bebescr.com/embarazo/emba0005.shtml Chile Alcohol y Embarazo; information about FAS from the Maternidad Clinica Santa Maria. http://www.csm.cl/maternidad/alcohol_embarazo.htm Efecto del alcohol durante el embarazo; http://educacion.123.cl/ciencia/articulos/efecto_alcohol_embarazo.htm Síndrome alcohol fetal; Département de Pédiatrie de l'Université du Chili. http://www.rms.cl/Numeros_anteriores/rmszz_11/H%20Temas%20de%20Pediatr%C3% ADa/s%C3%ADndrome_alcohol_fetal.htm China Unfortuately, this is not on-line, but Peggy Oba has translated some of Dr. Streissguth's work into Mainland Chinese and Hong Kong/Taiwan Traditional Chinese. She would be happy to her translations to you. Please email her at: PSOBA@aol.com. Croatia Fetusni Alkohoni Sindrom (FAS); an article by Doc. dr. Danijel Buljan, prof. dr. Vlatko Thaller. http://www.moravek.net/kla/26-002.html Alkohol i droge u trudnoc'i http://www.poliklinika-harni.hr/teme/trudnoca/07_alkohol.asp Cuba Centro de Referencia para el Diagnóstico de Malformaciones Congénitas Asesoramiento genético del stico del síndrome fetal alcohólico. Denmark Føtalt alkoholsyndrom; info on FAS in Danish. http://www.sst.dk/publ/publ1999/alkgrav/defa0011.htm Føtalt alkoholsyndrom og eruptionsafvigelser; an article on FAS with some pictures. http://www.tnl.dk/tidsskrift/arkiv/artikler/0702inger_kjaer.html Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 92 Videncenter om Alkohol; the Danish Resource and Information Centre on Alcohol is a national institution within the Danish Ministry of Social Affairs. http://www.alkoholviden.dk/ Click here for their page on FAS. http://www.alkoholviden.dk/default.asp?ID=166 England Fetal Alcohol Syndrome Trust Resources for parents/families. http://www.medicouncilalcol.demon.co.uk/FAST/fast.htm FAS-UK Group of parents and professionals dedicated to raising awareness. http://www.fasstar.com/UK/ Europe Eurocare; advocacy for the prevention of alcohol related harm in Europe. http://www.eurocare.org/ International Federation of the Blue Cross; its objectives are to assist those who are battling with alcohol-related problems, using every available modern means, to inform about the dangers of alcohol and all other drug abuse, to encourage prevention amongst young people, by promoting a drug free lifestyle, and to support an alcohol policy, promoting health for all. http://www.eurocare.org/bluecross/ Finland FAS-oireyhtymä http://www.sci.fi/~kup/syndroma/fas.htm France Alcool : le fœtus préfère l'abstinence; from Doctissimo.fr. http://www.doctissimo.fr/html/grossesse/pendant/facteurs_risque/gr_3953_alcool_foetus. htm Centre Hospitalier Universitaire de Rouen, Hopitaux de Rouen's FAS page http://www.chu-rouen.fr/ssf/pathol/alcoolismefoetalsyndrome.html Grossesse, alcool et tabac : le tiercé perdant; from Doctissimo.fr. http://www.doctissimo.fr/html/grossesse/mag_2002/0125/gr_5081_alcool_tabac_grossess e.htm Le syndrome d'alcoolisme foetal: une tragédie évitable; article by Dr Philippe Dehaene. Book: P. Dehaene, La Grossesse Et L'Alcool. Presses Universitaires De France, 1995. http://www.anpa.asso.fr/htmlfr/milieu/alcool_ou_sante_articles/f_milieu_recherche_syndrome.html Germany Alkohol In der Schwangerschaft: Kein Gläschen in Ehren! http://www.unverdorben.org/info/schwangerschaft/ernaehrung/alkohol.html FASworld Germany. http://fasae.freeservers.com/web3.html Click here for the English version of this site. http://fasalkoholembryopathie.freeservers.com/ Fetales Alkohol Syndrom. http://home.arcor.de/no/norbert.mallik/miscell/fas.htm Click here for the English version of this site. http://home.arcor.de/no/norbert.mallik/miscell/fas_engl.htm Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 93 Info on FAS from DRK Kliniken Berlin, Westend. http://www.drk-klinikenbln.de/westend/kinderheilkunde/sprechstunde.htm More info on FAS in Germany. http://www.uni-essen.de/~ibp010/alkemb/ Neue Erkenntnisse zum foetalen Alkoholsyndrom - Implikationen fuer Diagnostik, Behandlung und Praevention (Recent advances in fetal alcohol syndrome: Implications for diagnosis, intervention, and prevention); by Karen Kopera-Frye, Paul Connor, and Ann Streissguth. Articles are in German only. Part One. http://www.agsp.de/UB_Veroffentlichungen/Aufsatze/Aufsatz_12/hauptteil_aufsatz_12.h tml Part Two. http://www.agsp.de/UB_Veroffentlichungen/Aufsatze/Aufsatz_12/Aufsatz_12b/hauptteil _aufsatz_12b.html Book: H. Löser, Alkohol-embryopathie und Alkoholeffekte. Gustav Fisher Verlag, 1995. http://medweb.uni-muenster.de/institute/paedcard/forschung/f_alkohol.html Book: H. Merzenich & P. Lang Alkohol in der Schwangerschaft. Forschung und Praxis der Gesundheitsförderung, 2002. http://www.bzga.de/bzga_stat/fachpubl/dfh/dfh-171.html Click here to read it in pdf format. http://www.bzga.de/bzga_stat/fachpubl/pdfdatei/dfh17.pdf Hungary A magzati alkohol szindróma (MAS); an article on MAS, http://www.babapont.hu/egesz/alt/mas.html Magzati Alkohol Szindróma, an article from KIDS nyitóoldal. http://www.szulo.hu/kids/k01/exkl01.htm Book: Koenyv, A Magzati Alcohol-Szindróma. Medicina, 1981. Iceland Alkóhól, from Vísindavefurinn. http://visindavefur.hi.is/?id=2280 Áhrif áfengis á fóstur og Þroska barna http://www.saa.is/fraedsluefni/vimuefni/afengiII#Ahrif_afengis_a_fostur_og_throska_bar na International Journal of FAS International; a peer reviewed scientific journal on FAS. http://www.motherisk.org/JFAS/ Ireland Drugs Awareness Programme; a division of Crosscare, the Social Care Agency of he Dublin Diocese. http://www.dap.ie/ Foetal Alcohol Support Ireland http://www.fasireland.org/ Pregnancy alcohol limits 'too high'; an article on Dr. Jennifer Little's research in Ireland, published by BBC. http://news.bbc.co.uk/1/hi/health/619840.stm Italy La Sindrome Alcolica Fetale http://fit.supereva.it/associazionedivolont.freeweb/FAS.htm?p Japan Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 94 FAS in Japan; resources and articles in Japanese. http://www.geocities.co.jp/SweetHomeGreen/4808/ Click here to read a story about FAS in Japan, written in English. http://hometown.aol.com/psoba/myhomepage/family.html Luxembourg FASworld Luxembourg; website is mostly in French and German. http://www.fasaelu.com/ Netherlands FAS Stichting http://www.fasstichting.nl/ FAS: Expert Opinions; Dr. Ulf Rydberg and Dr. Ann Streissguth answer questions about FAS and its related conditions. Radio Netherlands; September 12, 2001 (in English). http://www.rnw.nl/science/html/fashome010912.html Norway 200 alkoholskadde barn fødes hvert år-Kvinners misbruk av alkohol under svangerskapet er den største kjente enkeltårsak til at barn fødes med hjerneskade, article from Dagsavisen.no. http://www.dagsavisen.no/innenriks/2001/10/613206.shtml Aline Foreningen http://www.alineforeningen.no/barna.htm Det føtale alkoholsyndrom - belyst ved litteratur og kasuistikk. http://www.alkoholfornuft.org/Bakgrunn/918061219.html Rask diagnose hjelper FAS-barn. http://www.folket.no/fasdiagn.htm Skadet i mors liv; a Norwegian documentary about children born with FAS/E and other birth injuries caused by their mother's drug abuse. http://www.nrk.no/kanal/nrk1/brennpunkt/1384639.html Anbefaler avhold; a continuation of that documentary. Click on "Anbefaler avhold" to hear Ann Streissguth talk about FAS (in English). http://www.nrk.no/programmer/tv/brennpunkt/1386290.html New Zealand The Alcohol Advisory Council of New Zealand http://www.alcohol.org.nz/ Drinking and Your Baby http://www.alcohol.org.nz/effects/fas/index.html Te Inu Waipiro Me Tö Pëpë (in Maöri) http://www.alcohol.org.nz/effects/fas/maori-index.html Alcohol Healthwatch; reducing alcohol related harm. http://www.ahw.co.nz/ Alcohol and Pregnancy: Foetal Alcohol Syndrome http://homepages.ihug.co.nz/~dcandmkw/fas/fas.htm Fetal Alcohol New Zealand (FANZ) Trust http://www.fanz.org.nz/ Poland alkoholowy zespól plodowy; an article on FAS in Polish. http://www.ipz.edu.pl/centrum/alerty/alkoholowy_zespol_plodowy.html Portugal Síndrome Alcoólica Fetal; a short summary of SAF. http://www.iec.uminho.pt/telmie/PT/Level3/content/Mental/alcoholi.htm Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 95 Puerto Rico Psicología Forense: Sobre Las Causas De La Conducta Criminal; scroll down to "Condiciones Congénitas: Síndrome fetal alcohólico." http://www.psicologiacientifica.com/articulos/ar-ang_vazquez01.htm Russia FAS and FAE Issues in Russia: Alcohol Related Birth Defects and International Adoption; article by Dr. Jane Aronson. Russian Adoption Resources can be found on the navigational bar. http://www.russianadoption.org/fas.htm Resource #1, http://www.narcom.ru/cabinet/online/17.html Resource #2, http://www.psychiatry.ru/library/lib/article.php4?booknumber=32&article_id=21 Resource #3, http://pregnancy.h1.ru/health/pregnancy/other/alco.htm Resource #4, http://www.bsmu.anrb.ru/publ/lec/index.asp?publ=fl1 Resource #5, http://razdolie.tomsk.ru/index.php?menu=4&article=43 Scotland FAS Scotland http://www.fas_scotland.homestead.com/ South Africa A new screening method for fetal alcohol syndrome; a blip located at the bottom of the Medical Research Council of South Africa's current projects page, that provides a little bit of info on the incidence of FAS in South Africa. http://momslife.com/directory/pregnancy.shtml Spain El alcohol en el embarazo; http://www.consumer.es/web/es/nutricion/salud_y_alimentacion/embarazo_y_lactancia/5 1162.jsp Estudio De La Motilidad Ocular En El Síndrome Alcohólico Fetal; an article on FAS with a few pictures. http://www.oftalmo.com/estrabologia/rev-98/98-06.htm Fetopatía alcohólica; information on FAS. http://www.insm.es/glosariogr/glosarionsm/terminos/ficha_terminos.php3?c_termino=36 0 Las Rutas Nocivas Del Alcohol Sobre El Feto; from the Facultad de Medicina, Universidad Complutense de Madrid. http://www.ucm.es/info/fmed/medicina.edu/Pediatria/nocivas.htm Pediatras del Hospital de La Candelaria advierten que el alcohol es uno de los principales factores de malformación fetal durante el embarazo http://www.comtf.es/doc/Pediatras%20Alcohol%20Feto.htm Síndrome alcohólico fetal; a report on SAF with lots of pictures. http://wellpath.uniovi.es/es/contenidos/seminario/pediatria/temas/html/tema9/clinica.htm Síndrome alcohólico fetal; information about SAF. http://www.unizar.es/gine/fas.htm Book: Sindrome Alcoholico Fetal, Jonrnadas Internacionales. Funación Valgrande, 1985. Sweden Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 96 Alkohol och graviditet; http://www.medicallink.se/news/showNews.cfm?newsID=1517 Fetalt Alkoholsyndrom; http://user.tninet.se/~fxg297r/nep_fetalt_alkoholsyndrom.htm Det kom ett brev om FAS; http://user.tninet.se/~fxg297r/fas.htm FAS-foreningen http://www.fasforeningen.nu/ Switzerland Fetalen Alkoholsyndroms; an article on FAS in German. http://www.sfaispa.ch/ServicePresse/allemand/Abhangigkeiten/Fetal.htm Ce qu'il faut savoir pour éviter les risques liés à la consommation d'alcool durant la grossesse; Institut suisse de prévention de l'alcoolisme et autres toxicomanies (in French). http://www.prevention.ch/offrez_a_votre_enfant_un_bon_depart_dans_la_vie.html Turkey Alkohol Pada Janin Sebabkan Masalah Perilaku http://www.jagajaga.com/anIhatiyook.php?ida=282 Ukraine Resource #1, http://www.jaga-jaga.com/anIhatiyook.php?ida=282 United Kingdom Alcoholism and Addiction; prevention, treatment and recovery resources. http://www.alchemyproject.net/ ALCOWEB, site for professionals, http://www.alcoweb.com/ Fetal Alcohol Syndrome; this is a good article on FAS by the Addiction Network. For faster reading, go up to "view" and click on "text zoom", then on "50%". http://www.addictionnetwork.co.uk/FAS.htm Qualitative European Drug Research Network http://www.qed.org.uk/ United States Alcohol y embarazo: Sindrome de alcohol en el feto y efectos de alcohol en el feto; a video about FAS in Spanish, produced by AIMS Multimedia. http://www.aimsmultimedia.com/title.php3?code=8494-SP-VID El Uso Perinatal de Sustancias: ¿Se está arriesgando ella?; from Idaho CareLine. http://www2.state.id.us/dhw/ecic/spanish/PPC/perinatalSub_Abuse.htm Eu sou o Viscom a Invisível Adolescente com a Invisível Deficiência; an article on invisible disabilities translated into Portuguese. http://comeover.to/FAS/brochures/visibleteenP.htm La bebida y su embarazo; an article on FAS in Spanish. http://comeover.to/FAS/brochures/visibleteenP.htm Síndrome de alcoholismo fetal; an article in Spanish, from KidsHealth.org. http://www.kidshealth.org/parent/en_espanol/fas_esp.html Uruguay Alcohol y embarazo; information on SFA from Alburg S.A. New Media Producer. http://www.latinsalud.com/articulos/00046.asp Fetal Alcohol Spectrum Disorder - International Research and Practice Inventory 97