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The first part of our 22q11 study involves an online survey, which will be completed by the parents of children diagnosed with 22q11DS, aged 3-15 years. This survey will take around 30 minutes to complete and responses will remain anonymous.
The survey will contain standard questionnaires for parents to provide information about their own and their children's psychosocial wellbeing, barriers to care, and costs related to 22q11DS. It aims to look at how 22q11DS affects care and access to services, and how it relates to mental and physical health.
The second part of the 22q11 study uses direct interviews of parents in order to receive more in-depth information about their individual experiences. We hope that this confidential interview will allow parents to elaborate on their own unique perspectives.
A portion of the parents who completed step 1 will be contacted for an interview to further discuss how 22q11DS impacts various areas of caregiving. We want to understand parental opinions on psychosocial wellbeing, access to services and potential improvements, and experiences with stigmatization or discrimination.
The third, and last, part of the 22q11 study involves a clinical trial to test an easy-to-access online coaching intervention. This new intervention is designed for the families of children diagnosed with 22q11DS, and its goal is to reduce related problems and improve wellbeing. If the trial proves that the intervention is effective, online coaching will be an important addition to the health care services offered to families.
Families who report negative impacts of 22q11DS on wellbeing will be invited to participate in this clinical trial, where they may receive treatment through the new intervention. The online coaching is designed to improve both parents' and children's wellbeing through a lower-cost and more easily accessible format. We hope that this new intervention will enhance skills, reduce related problems, and increase positive feelings.