Educating Families, Professionals, and the Public

Development of Educational Materials for the Prevention of Fetal Alcohol Spectrum Disorders in Russia

Prevention efforts in the United States have been successful in raising awareness and reducing alcohol consumption in the preconception and prenatal periods for selected groups of women. These efforts have not been implemented in Russia and consequently there is a need for similar measures. Despite the prevalence of alcohol use in Russia, there are no public health prevention programs designed to educate the general population about the effects of alcohol consumption during pregnancy. In addition, in the United States, it has been found that most OB/GYNs do ask their pregnant patients about alcohol use, and if a patient acknowledges alcohol use, most doctors will discuss its adverse effects and advise abstinence. However, focus groups at a public women’s clinic in Russia revealed that none of the women reported that a physician asked about alcohol use during pregnancy or discussed its effects. Thus, there is clearly a need to educate both women of childbearing age and their health care providers about alcohol consumption during pregnancy and FAS and related conditions. This project provides a unique opportunity to begin to raise public awareness about this issue in Russia.

Funded Project

University of Oklahoma Health Sciences Center – Oklahoma City, Oklahoma, in collaboration with St. Petersburg State University, Russia

The goal of this project was to increase knowledge and awareness to prevent fetal alcohol spectrum disorders (FASDs) in Russia through the development of (1) training materials for Russian health professionals (pediatricians, obstetricians-gynecologists, substance abuse treatment providers), (2) printed educational materials targeting women of childbearing age in Russia designed to increase their knowledge and change attitudes about alcohol use during pregnancy, and (3) the first web-based FASD education resource in the Russian language to disseminate information to women and the general public as well as a Russian language website for health professionals.

Educating Families and Professionals

In 2001, CDC funded four nonprofit organizations to develop and evaluate educational curricula for various audiences about fetal alcohol syndrome (FAS) and other prenatal alcohol-related disorders and how to access appropriate services for children with FAS and their families. Materials from some of these organizations are still available. More about each curriculum is described below.

The Arc of the United States—Silver Spring, Maryland

The Arc has developed and tested a comprehensive curriculum that can be presented to adult learners in a workshop format. Three modules address general information about FAS and related disorders, components of care for children with these conditions, and advocating for services and supports. Using this curriculum, The Arc has conducted over 30 trainings in approximately 20 states for more than 1,000 participants, such as parents/caregivers, professionals, and trainers. For more information about these materials and how to order them, please visit the Arc’s Website.

Double ARC—Toledo, Ohio

Double ARC has developed and tested separate training curricula for parents and teachers. The parent curriculum describes the core deficits of children with FAS and related conditions, teaches effective parenting techniques addressing these deficits, and directs parents to service resources for children, including school programs. The curriculum for teachers describes FAS and related conditions, ways to recognize children who might have the condition, and approaches to enhancing school performance. Double ARC has also created a video on FAS available for use with the curriculum. Double ARC offers training for facilitators who will be teaching the parent classes. These materials have been tested with more than 400 participants in sessions for parents and teachers. For more information about these materials and how to order them, please visit http://www.doublearc.org.

Education Development Center—Newton, Massachusetts

The Education Development Center developed and evaluated an online education package about FAS and related conditions; collaborated with state agencies to identify and prepare a state cadre of trainers; developed, facilitated, and evaluated an online training-of-trainers (TOT) course to prepare state trainers; and collaborated with state agencies to develop a system for providing FAS awareness sessions in schools targeting school staff and parents/caregivers. The content of the TOT and awareness sessions 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. The TOT program was conducted with more than 200 participants from 18 states and Guam. These trainers then delivered school-based workshops in their respective states.

National Indian Justice Center—Santa Rosa, California

The National Indian Justice Center has developed and tested a training curriculum that focuses on increasing awareness of FAS and related conditions and encourages a cooperative approach to referring and responding to persons with FAS within the tribal community. The curriculum includes information about the medical and psychological aspects of FAS and related conditions. It was developed to target American Indian populations and is designed for use by tribal court judges, law enforcement personnel, social service workers, tribal leaders, medical health providers, mental health providers, housing authority personnel, teachers/educators, and non-tribal judicial system personnel. The curriculum has been tested with more than 400 participants from tribes in California, Idaho, Oregon, and Washington. For more information about these materials and how to order them, please visit http://www.nijc.org.

FASD Education in South Dakota

Individuals with fetal alcohol spectrum disorders (FASDs), their families, and professionals who provide services to them require information, resources, and training to reduce the effects of FASDs and to identify and implement effective programs to enhance functioning. Children and adults living with FASDs are at high risk for a number of secondary conditions including mental health problems, trouble with the law, inappropriate sexual behavior, trouble living independently, trouble with employment, and substance use and abuse problems. Development of strategies to increase early diagnosis and treatment of FASDs can reduce and help manage these risks. Similarly, dissemination of information and training on effective intervention strategies to educators, social workers, legal/criminal justice workers, and medical providers offers the potential to increase the availability and provision of appropriate services and support to people living with FASDs.

Funded Project

Black Hills State University (BHSU) – Spearfish, South Dakota

The goal of this project, begun in 2004, was to develop and/or adapt, implement, and evaluate materials to educate professionals working in school systems, social service agencies, court systems, and public health service agencies about FASDs. This project targeted South Dakota, including some of the state’s American Indian populations. BHSU conducted the following activities through this project:

• Develop/adapt culturally appropriate training materials for educators working with K–8 students with FASDs.
• Develop/adapt a culturally and linguistically appropriate FASD curriculum to prepare K–12 teachers to teach children about alcohol use, pregnancy, and FASDs.
• Develop/adapt culturally appropriate training materials for juvenile justice staff who work with young offenders with FASDs.