Press Room

Distance Education for FAS Service Providers
by Louise Maerov, Timothy E. Moore, & Margaret Leslie

"Children with Fetal Alcohol Syndrome grow up in a world that overwhelms them, misinterprets them, and places expectations on them that they cannot fulfill. Without doubt, children with FAS challenge us to love them, care for them and help them learn and live in this world. We must learn to recognize their strengths and their needs. Armed with knowledge and by working together, we can respond to the issue of FAS."
Judy Kay, Family Support Worker, Healthy Generations

Background
Fetal Alcohol Syndrome (FAS) is a spectrum of mental and physical birth defects that can include growth deficiencies, facial abnormalities, and central nervous system dysfunction that can result in learning and behavioural problems. The incidence of FAS is estimated at one to three per 1000 live births, though some communities have much higher rates. Incidence rates of children born with partial FAS (formerly Fetal Alcohol Effect) are estimated to be two to three times higher than for FAS.

These numbers are likely very conservative due to problems of diagnosis and reporting. Fetal Alcohol Syndrome has been recognized in Canada as one of the leading causes of preventable birth defects and developmental delay in children.1 It has been estimated that the lifetime costs related to health and education for one person with FAS may exceed $1.4-million.2

FAS occurs as a direct result of a woman's alcohol consumption during pregnancy. While the preventable nature of FAS is apparent, public awareness of the hazards of alcohol use during pregnancy is limited. In addition, many health care providers and other professionals who have contact with pregnant women, or with families whose children may be affected by prenatal alcohol use, are unfamiliar with the issues of alcohol use among pregnant women and with the interventions that will help children with FAS develop to their full potential. There is a clear need for effective public education about FAS, as well as training of professionals who work with families and children.

Project
In June 1999, with funding from Health Canada, Ontario's North for the Children3 and Breaking the Cycle4 embarked on an innovative training approach using distance education to address the information and training needs of individuals whose knowledge of FAS was minimal, and those with basic expertise who were interested in improving or expanding their services. Target audiences for the training included Health Canada's Community Action Program for Children (CAPC) projects, Canada Prenatal Nutrition Programs (CPNP), Aboriginal Head Start (AHS) programs, and parent support networks that include biological, adoptive and foster parents of children with FAS. Secondary target audiences included teachers, social workers, public health professionals and physicians who were associated with Health Canada's community-based projects.

Training components were developed to enhance the capacity of Health Canada's community-based projects to engage and support women at risk of delivering children affected by FAS, and to identify and support children and families who are affected. Distance education gave agencies in remote and rural communities access to training.

The FAS Regional Education Initiative was comprised of the following training components:

Teleconferences. Accessible distance education was provided through a series of 11 monthly dial-in teleconferences between June 1999 and June 2000. A toll-free number gave trainees access to prerecorded presentations on a series of FAS-related topics. Participants listened to the presentation at their own site at their convenience, and participated in follow-up interactive discussion/question sessions with the presenter following the teleconference. Handouts, presentation materials, and discussions on an interactive webconference site supplemented the effectiveness of this training. Teleconference topics ranged from the effects of FAS on infants and children to working with substance using pregnant women and community prevention of FAS.

Training Video. A video, Different Directions: Understanding Fetal Alcohol Syndrome, was produced. Through stories from mothers of children with FAS and messages from professionals in the field, the video touches on issues of prevention, interventions, challenges and roadblocks, as well as the strong need for information and training.

Train-the-Trainer Manual for Professionals and Parent Support Groups. The manual was designed to be used with the training video, and is based on the information delivered through the teleconference series. It was developed to provide opportunities for increasing knowledge about FAS, developing a network with other service providers and parents, reflecting on personal philosophy, attitudes and practices, and increasing awareness of cultural, linguistic and regional relevance of community resources.

Impact of Distance Training
Evaluation of the teleconference series indicates positive outcomes. Beyond generating awareness and providing the resources needed to support parents and children, the program’s effectiveness is in ongoing, widespread distribution of information. Activity is sustained through conference presentations, publications, tele- and web-conferencing, and the ready availability of resources.

Feedback forms indicated high user satisfaction with the program. Positive comments from participants included "convenient and accessible”, “effective, efficient, and user-friendly” and “great resource for us in isolated rural areas.” Ease of access and cost both seemed to play an important role in the high participation rate.

About half the sites purchased audio tapes generated from the teleconferences for staff who were unavailable for the dial-in(s) or for others who wanted to review the material. Several sites found the tapes valuable for use with parents. Involvement in the initiative often resulted in improvements to the programs/services offered by selected pilot sites. The initiative inspired spinoff programs within agencies, such as an FAS prevention program in one community and a partnership with schools to host a one day FAS training session for teachers, professionals and families. Overall, the evaluations suggest a growing awareness and an appreciation of resources that give direction in dealing with FAS.

From a teaching perspective, pre-recorded audio presentations delivered over a telephone line are a less-than-ideal way to engage learners. A few respondents lamented the lack of face-to-face interactions. On the other hand, considering the remote locations of some sites and the sheer volume of information that was organized and disseminated, it is difficult to imagine an alternative delivery system that could reach and engage so many people without prohibitive costs.

Louise Maerov, BA, Primary Specialist Cert., is project coordinator of the FAS Regional Education Initiative. Timothy E. Moore, PhD, C.Psych., is professor of psychology at Glendon College, York University, Toronto. Margaret Leslie, Dip.C.S., C.Psych.Assoc., is manager of Early Intervention Services, Mothercraft and program manager of Breaking the Cycle.

For more information regarding the FAS Regional Education Initiative, please contact:
Louise Maerov: phone (416) 920-4054 ext. 122; fax (416) 920-5983; email louisecm@planeteer.com. The video, Different Directions: Understanding Fetal Alcohol Syndrome, can be ordered [$50] from Pat Spadetto, Ontario’s North for the children, 6 Hudson Bay Ave., Kirkland Lake, Ontario, P2N 4H7. © CCCF 2001

Endnotes

1. Health Canada, (October 1996). Joint Statement: Prevention of Fetal Alcohol Syndrome (FAS) Fetal Alcohol Effects (FAE) in Canada.
2. Oliver, C., White, R, Edwards, M., (1998). Fetal Alcohol Syndrome: A Hopeful Challenge for Children, Families and Communities. Health Canada.
3. Ontario's North for the children is a non-profit association of the CAPC programs in northern Ontario. Incorporated in 1998, the focus of ONFTC is to increase the capacity of CAPC programs to deliver services within their communities and ensure the sustainability of these services.
4. Breaking the Cycle is a CAPC/CPNP initiative in Toronto designed to enhance the development of substance-exposed children by addressing maternal addiction problems and the mother-child relationship through a cross-systemic, community-based model.