TRIS project online modules for families and medical professionals
To date, over 1000 families from around the world have enrolled in the TRIS project. Data from submitted surveys have led to 15 publications and over 20 presentations (national and international meetings and conferences). In addition, 12 case studies were developed in 2014 and are available for download at http://tris.siu.edu/case-studies/index.php.
Yet, a recurring need has been availability of concise and accessible information to showcase the abilities and needs of children diagnosed with low incidence trisomy conditions. To this end, online modules have been developed providing historical background, relevant literature, overview of daily and medical care, and recommendations for monitoring key medical needs based on research and anecdotal reports. Additional family support information has been included highlighting positive aspects of the experience along with unmet needs. Finally, quotes from newspaper articles describing raising a child with a low incidence trisomy condition are also shared to draw attention to several common as well as unique issues families face.
It is hoped these modules are shared with expectant parents, families with a child diagnosed with full trisomy 18, full trisomy 13 or trisomy 9 mosaicism and also with medical professionals and others caring for the child including therapists and teachers. It is especially important to disseminate to those on a child’s medical and developmental/educational team so that the focus is on strengths within the context of addressing needs and facilitating continued growth.