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iRT To Develop New Mindfulness Program For Youth With 22q11.2 Deletion Syndrome

Tuesday, January 8, 2019

iRT was awarded a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) to develop an online mindfulness training program, specifically developed for use by adolescents with 22q11.2 deletion syndrome (22q11DS).

22q11DS, a common genetic disorder, occurs in 1 in 2000 live births, and often results in significant physical and neurodevelopmental challenges. In fact, some youth with 22q11DS experience deficits in both their cognitive as well as their social functioning. Relatedly, youth with 22q11DS often experience high levels of anxiety, particularly in social situations. Despite the relatively large numbers of youth born with this disorder and its significant impact on their lives, very few behavioral interventions have been created for them to address their behavioral, emotional, and neurodevelopmental health problems.

“Our goal is to fill this gap in interventions designed to help teens with 22q11DS,” says Principal Investigator Alison Parker, Ph.D. “By developing a program tailored specifically for these youth, [we can] teach and demonstrate new skills to help them cope with anxiety and stress, as well as enhance their daily lives.”

iRT’s previous work in the area of mindfulness, as well as the work of others in the field, provides support that mindfulness training and practice may reduce many of the symptoms of 22q11DS. For example, by learning and practicing mindfulness, youth may become more aware of their feelings, thoughts, and behaviors, which in turn, can improve their ability to manage their feelings and actions during challenging or stressful situations.

iRT has a long history of developing intervention programs to help youth with developmental disabilities, behavioral health problems, or chronic illnesses. For example, the current program will be similar in its goals to the Aware Program, which is also a web-based mindfulness education program that was designed for adolescents with Fetal Alcohol Spectrum Disorder (FASD). The Aware program for youth with FASD teaches mindfulness skills with a focus on reducing impulsive behaviors and decision-making, particularly in social and risky health situations.  

As part of this new project, iRT will consult with experts, families, and youth with 22q11DS to produce a self-paced, satisfying, easy-to-use program that helps adolescents increase awareness while reducing negative symptoms like anxiety. This project will lay the foundation for the continued development of mindfulness training for this group of youth.