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The eCare-22q11 Initiative brings together experts of medical genetics and e-Health to support families of patients diagnosed with the 22q11 deletion syndrome (22q11DS). To make sure that the novel support tools (that are going to be designed by the initiative) really address the needs of families, we aim to include the families as active co-designers in the development of these tools.
The first tools we aim to develop will focus on caregivers, as they play such an important role in the care of children with 22q11DS. Our goal is to hear from parents or caregivers of children who have 22q11DS. Specifically, we want to learn about caregivers’ feelings and experiences. We also want to learn, how support tools should look like? The information will be used to help us understand how to design interventions for caregivers and support them in their caregiving roles. We will strongly focus on online interventions as we believe that online interventions (i.e., telehealth, websites, apps) might be very helpful as caregivers could use them wherever they are and whenever they like. This could be especially important in light of the recent pandemic. It would be fantastic if you could imagine helping us. You can find more information about the project and a survey link here: 22q11
Dr. Sandra Meier, IWK Health Centre, Halifax, NS
Prof. Patrick McGrath, IWK Health Centre, Halifax, NS
Dr. Andrea Rideout, IWK Health Centre, Halifax, NS
MSc. Andrea Shugar, Hospital for Sick Children (SickKids), Toronto, ON
MSc. Cheryl Cytrynbaum, Hospital for Sick Children (SickKids), Toronto, ON
Prof. Anne Bassett, University of Toronto, Toronto, ON
MSW., RS.W Lisa Palmer, University of Toronto, Toronto, ON
Prof. Donna M. McDonald-McGinn, The Children's Hospital of Philadelphia, Philadelphia, USA