Educational Technology

The original aim of the project was to provide patients and families with tools for better training and information. The Executive Committee retained two priority needs identified by the Patient-Experts of the Advisory Pole:

1. A memo book for families, to keep a record of the patient’s life path.
2. A tool offering strategies to help children build their self-esteem, share their emotions along the way and connect with their families and caregivers.

Subsequently, a focus group conducted an ideation phase with the help of Yapouni, an external partner specializing in the development of therapeutic and playful games, and mapped the major events in the life course of a child with neuro-musculoskeletal disorders. The decision was made to focus on the following events:

• The pre-diagnosis stage (the period before the definitive diagnosis, which can involve uncertainty and challenges at home);
• The diagnosis stage (where support is needed to help families absorb and accept new information, both at home and in a medical context)
• The day-to-day living stage (where families require support in order to anticipate what comes next and to adapt to their new reality, both at home and in a medical context).

The project then evolved: given that an application under development at the Montreal Children’s Hospital met the first need/objective (memo book for families), it was decided to focus on the second need/objective (tool for children) and to foster a collaboration between the working groups.

A working committee was therefore set up, bringing together professionals from the partner establishments with different areas of expertise. This committee is currently reflecting on the development of an application to trace the child’s life path, with possibly an avatar that will evolve with him according to his emotions, and situation scenarios to identify his strengths.

Working committee :

• Angélique Bélec, Patient-Ressource, MUSCO
• Argerie Tsimicalis, Researcher, Shriners Hospital for children – Canada
• Aurélie Vigné, Manager, MUSCO
• Camille Brosseau, Inter-establishment Navigator, MUSCO
• Dan Poenaru, Pediatric Surgeon, Montreal Children’s Hospital
• Elena Guadagno, Research Director, Division of Pediatric Surgery, Montreal Children’s Hospital
• Gianluca Bertolizio, pediatric Anesthesist, Montreal Children’s Hospital
• Jordana Saada, Senior Advisor, Patient Experience, Montreal Children’s Hospital
• Karine Labarre, Nurse clinician, CHU Sainte-Justine
• Katharina Bourgin, Project and communications Manager, MUSCO
• Krystalanne Pacheco Cabral, Certified Child Life Specialist, Montreal Children’s Hospital
• Laurence Lesser, Director, Association de spina-bifida et d’hydrocéphalie du Québec
• Nathalie Bilodeau, Occupational therapist, Shriners Hospital for children – Canada
• Stéphanie Renaud Beaudin, Patient-Ressource, MUSCO
• Sabrina Purcell Lalonde, Social Worker, Marie Enfant rehabilitation Center
• Tamara Malinoff, Psychoeducator, Montreal Children’s Hospital
• Tina Athanasoulias, Clinical Nurse Specialist,
• Vanessa Tessier, specialized educator, Marie Enfant rehabilitation Center