Improving the quality of life of patients and families begins with a sense of support and a seamless experience between institutions. A number of projects have been developed within the scope of MUSCO to allow patients and their families to feel supported and to streamline and facilitate the corresponding administrative procedures. This involves providing tools and resources to improve logistics and families’ experiences throughout their care trajectory.

MUSCO Projects
Collaboration

Educational Technology

Project leader

Elena Guadagno Research Director, Division of Pediatric Surgery, Montreal Children’s Hospital

The project

To develop educational technology that supports patients and their families in their life journey and reinforces self-esteem

MUSCO Strategic Goal

Provide direct support to patients and their families

Project Objectives

  1. 1

    Compile factual information about the patient’s life journey

  2. 2

    Enable parents to anticipate and prepare for next steps

  3. 3

    Foster emotional dialogue within the family

  4. 4

    Reinforce the child’s self-esteem and resilience

  5. 5

    Enable caregivers to map the child’s emotional journey

  6. 6

    Enable the family and the child to share milestones

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Progress Report

Progress Report
Progress Report
Progress Report
Progress Report
Progress Report
Progress Report
Progress Report
Progress Report

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 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
  • Argerie Tsimicalis
  • Aurélie Vigné
  • Camille Brosseau
  • Dan Poenaru
  • Elena Guadagno
  • Gianluca Bertolizio
  • Jordana Saada
  • Karine Labarre
  • Karine Couture
  • Katharina Bourgin
  • Krystalanne Pacheco Cabral
  • Laurence Lesser
  • Nathalie Bilodeau
  • Stéphanie Renaud Beaudin
  • Sabrina Purcell Lalonde
  • Tamara Malinoff
  • Tina Athanasoulias
  • Vanessa Tessier