Newsletter December 2024

Advances in the Educational Technology project

to support young people in their life paths

Following an initial brainstorming phase, two directions were chosen for the Educational Technology project to support patients and families: 1) a “memo book” to keep track of appointments, results and important information related to the child’s condition during the course of care, and 2) a tool offering strategies to help children build self-esteem, share emotions and connect with their families and caregivers. In short, the aim was to develop a tool to help families on both a practical and emotional level, throughout their trajectory.

A new working committee to centralize expertise

Having begun with an ideation phase to identify potential needs across the major events in the care pathway of a child with neuro-musculoskeletal disorders, the project has evolved over the past two years. It turned out that the first need identified – for a form of ‘memo book’ – could be met by an application currently under development at the Montreal Children’s Hospital. The decision was therefore taken to focus jointly on the second objective: Supporting young people’s self-esteem.

A working committee was set up to bring together the expertise of each center to work more concretely on the project. Some fifteen members from the partner establishments, a Patient-Resource and a community representative with experience in application development met on several occasions to co-design the project’s content and drive it forward.

The committee members are:

• Argerie Tsimicalis, Researcher, Shriners Hospitals for Children – Canada
• Aurélie Vigné, Manager, MUSCO
• Camille Brosseau, Inter-establishment Navigator, MUSCO
• Dan Poenaru, Pediatric Surgeon, Montreal Children’s Hospital
• Elena Guadagno, Director of Research, Division of Pediatric Surgery, Montreal Children’s Hospital
• Gianluca Bertolizio, Pediatric Anesthesiologist, Montreal Children’s Hospital
• Jordana Saada, Senior Advisor, Patient Experience, The Montreal Children’s Hospital
• Karine Labarre, Nurse Clinician Pivot, CHU Sainte-Justine
• Katharina Bourgin, Project and Communications Manager, MUSCO
• Krystalanne Pacheco Cabral, Child Life Specialist, Montreal Children’s Hospital
• Laurence Lesser, Director, Association de spina-bifida et d’hydrocéphalie du Québec
• Nathalie Bilodeau, Occupational Therapist, Shriners Hospitals for Children – Canada
• Stéphanie Renaud Beaudin, Patient-Resource, MUSCO
• Sabrina Purcell Lalonde, Social Worker, Centre de réadaptation Marie Enfant
• Tamara Malinoff, Psychoeducator, Montreal Children’s Hospital
• Tina Athanasoulias, Clinical Nurse Specialist, Shriners Hospitals for Children – Canada
• Vanessa Tessier, Specialized Educator, Centre de réadaptation Marie Enfant and Specialized school Joseph Charbonneau

Identifying needs and thinking about possible functionalities

The committee’s collaborative effort produced a preliminary list of needs that a technology tool could address, for parents, children and professionals alike. A series of potential functionalities were also explored.

“Developing technology of this kind is a long-term process, particularly in the context of inter-institutional collaboration,” explains Elena Guadagno, head of the working committee of the Educational Technology project. This allows us to minimize blind spots and think of a variety of solutions to support young people,” she adds.

During discussions within the committee, a number of important questions were raised: how can the application and communication modes be adapted to the child’s condition and needs? Will professionals also be users?

At the same time, several discussions were held with various departments within the partner establishments, such as innovation offices, IT departments and legal departments, to ensure that these different aspects were covered alongside the definition of the tool’s actual content.

Validating needs through focus groups

To ensure that the project meets the real needs of future users, a series of focus groups is planned with young people with neuro-musculoskeletal disorders in adapted schools and at the Centre de réadaptation Marie enfant. Several members of the working committee helped prepare these focus groups, defining the content of the questions to be asked and the format of the exchanges with the students.

“I think that, in addition to understanding the technological universe in which they live, it’s important to see how patients perceive their own strengths, to learn more about how they overcome difficulties and what resources help them get through more difficult times,” says Tamara Malinoff, member of the working committee who helped develop the activities and forms for the focus groups.

Sophie Mongrain, pedagogical advisor responsible for TEVA at the CSSDM, and Vanessa Tessier, a member of the working committee, provided invaluable support in organizing the logistics of the discussion groups. These collective efforts paid off on November 25, when the very first discussion group was held at Joseph Charbonneau school, bringing together nearly 15 students aged 12 to 21. The school teachers from both groups who were mobilized for this exchange also took part in the collective effort, facilitating the completion of questionnaires and exchanges.

I think that my self-esteem doesn’t depend on others, it comes from me and what I think inside me – Participant in the November 25th focus group.

A number of lessons have already been learned from this first focus group. Several other groups will follow at the beginning of 2025, and the analysis of all the discussions will provide a full picture of young people’s needs and guide the next stage of the project.