Brighter Tomorrows Website (KY UCEDD) Has Been Updated
September 6, 2012
http://www.brightertomorrows.org
|
A fully updated version of Brighter Tomorrows, the Web-based tool for Families receiving a diagnosis of Down syndrome, is now available: www.brightertomorrows.org Originally funded by the Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, through a cooperative agreement with the Association of University Centers on Disabilities (Grant NO: AUCD RTOI 2007-03-01), this family Website provides information parallel to that documented as effective in a variety of studies. Based on recent research, such as the latest studies of Skotko et al. on family experiences (2011), those of Choi et al. (2012) and Sheets et al. (2012) on informed decision making, as well as feedback surveys from the Brighter Tomorrows Website itself, the revised website now incorporates individuals' with Down syndrome own perspectives, family views, and reflections from siblings.
The Website features three primary sections:
1) A Question and Answer section divided into pre-natal and post-natal diagnoses with accompanying videos of virtual physician/patient interaction as well as targeted interviews with a father of a child with Down syndrome. The latter provides the viewer with powerful insights into the life possibilities for individuals with Down syndrome, as well as the compelling need for accurate and balanced information at the point of diagnosis.
2) A Life Glimpses section with nine individuals whose lives are followed from their birth through the present. These stories include family and friends' thoughts on their own experiences, as well as those of the individual with Down syndrome.
3) Revised Resource documents that are fully printable. Resources range from important information on possible health issues for individuals with Down syndrome, early intervention, and family dynamics, to a list of references that include both academic articles and more "family friendly" information such as Ionnane and Meredith's Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome (2011), available from www.downsyndromepregnancy.org.
Updates for the Spanish version for Brighter Tomorrows will also be available in the very near future.
References
Levis, D.M., Harris, S, Whitehead, N, Moultrie, R, Duwe, K., & Rasmussen, S.A. (2012). Women's knowledge, attitudes, and beliefs about Down syndrome: A qualitative research study. American Journal of Medical Genetics, 158A, 1355-1362.
Sheets, K.B, Best, R.G., Brasington, C.K., & Will, M.C. (2011). Balanced information about Down syndrome: What is essential? American Journal of Medical Genetics, Part A, 155, 1246-1257.
Skotko, B.G., Levine, S.P., & Goldstein R. (2011). Having a son or daughter with Down syndrome: Perspectives from mothers and fathers. American Journal Medical Genetics Part A, 155, 2335-2347
