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FAS/E resources on the Internet



A. Introduction



This review of Internet resources on FAS/FAE (also referred to as ARBI for alcohol-related brain injury) covers English-language resources from Canada and the United States, while acknowledging that many excellent FAS/FAE resources are available in other languages. Non-English resources are often mentioned in the links section of English-language websites on this topic.



To obtain a comprehensive listing of Internet resources on FAS/FAE/ARBI, use the Yahoo search engine http://ca.yahoo.com/Health/Diseases_and_Conditions/Fetal_Alcohol_Syndrom...), or a health-specific search engine, such as Health finder (www.healthfinder.gov), or more specifically, the National Clearinghouse for Drug and Alcohol Use search engine, PREVLINE (http://nsawi.health.org). Many FAS websites provide links to other online resources.



Given the borderless nature of the Internet, it may seem pointless to distinguish between Canadian, American and international Internet sites. However, health information is contextualized, in part, by a nation's health care system. Health information is also shaped by a population's geographic location, its language, culture and socioeconomic factors. It is important that users of Internet resources, which are primarily websites, are aware of potential differences in diagnosis, treatment (availability and cost), and prognosis of individuals with FAS/FAE based on geographic location.



Internet resources on FAS/FAE can be further differentiated on the basis of authorship. In general, resources created by government health departments and health organizations are considered of higher quality than those created by individuals and organizations with an emotional interest in this health issue. The reasons for this are twofold - government bodies have greater monetary resources at their disposal and qualified health professionals to develop comprehensive, scientifically valid health information resources on any given health topic, and to host them on a stable Internet server. Because caregivers of individuals with FAS/FAE have a strong emotional involvement, the health information they post online may be biased with judgmental attitudes and display moral superiority, particularly towards the birth mother who drank during pregnancy. However, these Internet sites do contain valuable information on health, counselling, and educational services for FAS/FAE individuals and advice for caregivers on how to cope with the many demands FAS/FAE individuals place on them because of their extensive handicaps.



While these resources are reviewed primarily on the basis of the quality and comprehensiveness of their content, design considerations such as navigation, text and image layout, are examined, because these factors affect the readability and comprehension of information.

B. Government health departments and agencies



Canadian



Canadian Centre on Substance Abuse

http://www.ccsa.ca/fasgen.htm



The FAS/FAE Information Service is a national FAS/FAE resource centre sponsored by Health Canada, the Association of Canadian Distillers and the Brewers' Association of Canada, created in 1994. A division of the Canadian Centre on Substance Abuse, it offers extensive information services in both official languages. Its development was coordinated by the Canadian Paediatric Society.



Apart from wondering out loud as to how the alcohol industry got involved in funding this endeavour, overall impressions of this resource are positive. The site is well designed - using frames and an icon navigation bar to facilitate navigation, as well as hypertext links at the bottom of each page. Text is legible and coloured fonts are used to indicate headings.



Information resources include a News section, with links to new government programs and services on FAS, such as the Government of Alberta's Fetal Alcohol Syndrome Initiative, policy statements, FAS statistics, bibliographies, and a listserv, FASLink, which is now hosted by Bruce Ritchie, Executive Director of the TRIUMF Porject.



Fetal alcohol syndrome is clearly defined and described, as are current prevention efforts. Recommendations are made for family-centred and culturally sensitive, comprehensive programs that target women before and during childbearing years, and improve the ability of health professionals to identify at-risk drinking and provide counselling services for women. Treatment programs that incorporate the needs of women and give priority to pregnant women seeking treatment are recommended.



As well, the CCSA site provides online publications, such as Give and Take: A booklet for pregnant women about alcohol and other drugs, which includes comprehensive information on the risks associated with taking drugs (legal and illicit) during pregnancy, and a helpful list of agencies dealing with alcohol and other drug problems. Other useful resources include the Directory of FAS/FAE Information and Support Services in Canada, a thorough listing of all Canadian services related to FAS, organized according to geographic location, including postal address, email address and website URL More generally, the Resource Archive lists and describes electronic resources, programs, publications and videos pertaining to substance abuse, and a search engine enables users to search CCSA Databases on substance abuse, treatment services, organizations, educational programs, and addictions health professionals across Canada. Links are provided to related networks, including the Canadian Community Epidemiology Network on Drug Use and the Canadian Substance Abuse Information Network.



Overall, the CCSA website ranks as number one as a well organized, exhaustive (and neutral) information repository for information on FAS, and more generally, on drug abuse, treatment, and services.



Other Canadian government FAS resources online:



1)Canadian Task Force on Preventive Health Care

http://www.ctfphc.org/Ta`bles/Ch05tab.htm



2) Government of Alberta News release:



More help for individuals with Fetal Alcohol Syndrome

http://www.gov.ab.ca/can/199811/7006.html

New initiatives target fetal alcohol syndrome

http://www.aeda.gov.ab.ca/acn/199804/6166.html

Fetal Alcohol Syndrome and Other Alcohol-Related Birth Defects: Intervention Strategies

http://www.gov.ab.ca/aadac/addictions/abc/fas_intervention.htm



3) Canadian Women's Health Network Special Report

A potent mix of issues

http://www.cwhn.ca/network-reseau/network/network_vol1no1/index.html

-covers issues pertaining to women's rights versus fetal rights, in particular, read Alcohol and Other Drug Use During Pregnancy: The Facts, and, for research projects, Two Centres of Excellence on women's health to study substance use and mothering



American



Centers for Disease Control and Prevention

Fetal Alcohol Syndrome Branch

http://www.cdc.gov/nceh/programs/cddh/fasabout.htm

According to the website, the mission of the CDC FAS branch is "The prevention of Fetal Alcohol Syndrome and other alcohol-related birth defects and developmental disabilities". The CDC FAS website, like the CCSA, is well organized and designed and provides extensive information on FAS, the relationship between amount of alcohol drunk by the pregnant mother and the extent of FAS, American FAS statistics, and treatment options for individuals with FAS.



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C. Research and/or policy



Canadian



Addiction Research Foundation

http://www.arf.org/isd/info.html



The Addiction Research Foundation website is well organized and provides an extensive listing of information resources on alcohol, tobacco and other drugs. This includes online access to the ARF library catalogue, audio-visual subject lists (including one on children of alcoholics and adult children of alcoholics), statistics on alcohol use in Ontario, bibliographies (including one on pregnancy and substance abuse), staff publications, and links to alcohol-related organizations online. Of particular interest are the online public information materials and information packages, in particular, "Women, Alcohol & Other Drugs". This information package (see http://www.arf.org/ids/infopak/women.html ) outlines the effects of drinking on women's health, the connections between addiction in women and depressive and anxiety disorders and low self-esteem, the extensive barriers to treatment that women face. It provides a profile of the types of women at risk, and calls for more research on gender roles and social interactions, multiple substance use studies, and gender-focused longitudinal studies. The annotated bibliography, list of additional resources, and list of public information materials contained in this online document is both comprehensive and invaluable.



American



Alcohol: Problems and Solutions

Fetal Alcohol Syndrome

http://www2.potsdam.edu/alcohol-info/FAS/FAS.html

The Alcohol: Problems and Solutions website was developed by David J. Hanson Ph.D., a professor of sociology at the State University of New York at Potsdam, and established researcher on alcohol and drinking. The website has received many awards and honours, including Librarians' Guide to the Best Information on the Net. Unlike many FAS websites, it contains a disclaimer, in which funding from The Distilled Spirits Council of the United States, Inc. is acknowledged.



The webpage on Fetal Alcohol Syndrome outlines the physical and mental disabilities characteristic of individuals with FAS. The webpage is primarily of interest for its literature review on the relationship between amount of drinking during pregnancy and incidence of FAS and its extensive reading list on this topic. The author concludes that 1. light drinking during pregnancy does not cause FAS 2. current educational programs, which he calls scare campaigns, aimed at preventing women from drinking during pregnancy are ineffective, and 3. more treatment programs for pregnant women who drink are required.



These points, and the scary trend to incarcerate women who drink during pregnancy, particularly minority women, are covered in detail in the publication, "Punishing women for their behavior during pregnancy: An approach that undermines women's health and children's interests" from The Center for Reproductive Law and Policy. The publication is located at the Lindesmith Center website, http://www.lindesmith.org/library/ womrepro.html


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D. Not-for-profit organizations on FAS



Canadian



Alcohol Related Brain Injury (FAS/FAE) Resource Site

http://www.arbi.org/



This is an extremely well designed website providing a wealth of resources on FAS/FAE, referred to here as alcohol related birth injury (ARBI). Funded by grants from the Alberta Family and Social Services and the Fetal Alcohol Syndrome Coordination Coommittee of Lethbridge, this website was developed by many health and social service professionals across Alberta who work with FAS children and drinking mothers, and the web design firm, inLine imAge Web Designers. The philosophy of the authors is that the assistance of FAS children and their families, and women who drink, must be a societal effort: everyone is responsible for helping these people.

The website features a Special Features page, which lists new additions to the site, upcoming events, answers to common ARBI questions and a quiz. The Health Care Professional Centre webpage describes the physical and mental characteristics of FAS/FAE individuals and outlines the role of the health professional in the prevention of FAS/FAE through screening, patient education, advocacy and diagnosis. Treatment protocols are provided. A unique feature, the Schoolhouse-Educators Consortium webpage, describes how to create an effective learning environment for the FAS/FAE child and effective behavior management techniques.



Fetal Alcohol Syndrome: The TRIUMF Project and the Fetal Alcohol Support Network of Toronto & Peel

http://www.acbr.com/fas/

Developed by Bruce Ritchie, the father of a child with FAS, this website provides an extensive amount of information on FAS/FAE, including a thorough description of the neurological impairments, physical signs, mental health and social interaction problems of individuals with FAS, a downloadable FAS/E InfoDisk which contains many articles on FAS, and the BC Ministry of Education, Skills and Training resource guide, Teaching students with fetal alcohol syndrome/effects/.



A detailed description of the TRIUMF Project, a proposed series of multi-disciplinary diagnostic/training clinics, and self-sustaining residential village/farm/campground/rehab and conference centres on FAS and static encephalopathy, is provided. Funds are being solicited for this project, which is intended eventually to be self-sustaining. No information is provided as to the state of this project - do any of these facilities exist is available on this webpage.

Particularly noteworthy is the attempt to provide interactivity through the hosting of a free listserv for families and professionals who deal with FAS - FASlink. From the many touching tributes to FASlink posted on the webpage, faslink.htm, it is evident that parents and professionals across North America and the world find this listserv to be an invaluable resource for dealing with FAS offspring. It is evident that many parents feel that adoption agencies, government health and social services, and teachers, are unhelpful in parental efforts to cope with the large burden that caring for FAS/E children presents, and FASlink provides emotional support and encouragement to overcome these hurdles.



Unfortunately, there are two negative aspects to this website. One is of a technical nature - the links pages requires better organization according to subject heading and the underlined appearance of all links makes the text difficult to read. More seriously, the judgmental and sanctimonious attitudes towards birth mothers who drink ANY amount of alcohol during pregnancy is really regrettable, as it contributes nothing to helping solve the root of this problem - getting women to abstain from drinking during pregnancy. Unfortunately, this tone is commonly found on FAS websites developed by parents (mainly adoptive) of FAS/E children, for example, Teresa Kellerman's Fetal Alcohol Syndrome Community Resource Centre (http://www.azstarnet.com/com/~tjk/fashome.htm). Although in her defense, she does at least mention the role of the father in women's drinking and the link between father's drinking and fetal development.



American



The National Organization on Fetal Alcohol Syndrome (NOFAS)

http://www.nofas.org/whatnofa.htm

According to information posted on its homepage, "NOFAS is a 501-(c)(3) nonprofit organization founded in 1990 dedicated to eliminating birth defects caused by alcohol consumption during pregnancy and improving the quality of life for those individuals and families affected. NOFAS is the only national organization focusing solely on FAS, the leading known cause of mental retardation. NOFAS piloted many of its programs in Native American communities and continues to take a multicultural approach to prevention and healing in communities nationwide. NOFAS applies a multicultural approach in its prevention and healing strategies in communities nationwide. .. All of NOFAS's work is dedicated to spreading the message that drinking and pregnancy does not mix."



The NOFAS website is rather plainly designed and focuses on describing the structure and activities of the organization, and to a lesser extent, on providing information resources. A description of the NOFAS Board of Directors and the NOFAS leadership award is provided.


See OHPE Bulletin #125.2 for full listing of resources.