Imagining an educational technology together
so that families can better educate and inform themselves
Following several very stimulating brainstorming meetings, the ideation group working on the educational technology project identified seven main steps in the patient’s journey, three of which were retained by the Executive Committee as the main axes for developing the project in concrete terms. Going forward, efforts will therefore focus on: (1) the pre-diagnosis stage (the period before the announcement of the diagnosis, particularly the uncertainties and difficulties experienced within the family), (2) the diagnosis stage (which may translate for professionals into the need to provide support to families in order to help them integrate and accept the announcement of this news) and (3) the stage of daily life with the disease (to equip parents, help them anticipate the stages and adapt to their reality and daily life).
For the record, here are the two priority needs that had been identified by the Patient Experts and retained by the Executive Committee in order to develop this educational technology for the benefit of patients and families: a memo book to keep track of the patient’s life path and a tool to provide strategies for the child to strengthen his or her self-esteem and share his or her emotions.
Educational technologies can have a real added value in offering young patients and their families the means to better prepare for the different stages that await them. It is with this objective in mind that the ideation group approached the major events that a child with musculoskeletal disorders may experience.
Tamara Malinoff, a psychoeducator at the Montreal Children’s Hospital and Nathalie Bilodeau, an occupational therapist at the Shriners Hospital for Children – Canada, agreed to participate in this multidisciplinary group (composed of an occupational therapist a senior nurse consultant, a psychoeducator, a social worker, a psychologist, a MUSCO inter-establishment navigator and a Resource Patient) to reflect on this MUSCO project. Tamara was able to act as spokesperson for the working group by sharing the results of their work at the Executive Committee meeting.
Nathalie was reassured to see that the issues raised during the brainstorming sessions by these professionals were in line with those raised by the families who shared their experience during the ideation process:
The group was supported in its reflections by the organization Yapouni, which conducted interviews with families to map their life course. Yapouni creates educational games to help children and their parents understand the care process and make hospitalization less dramatic. Working with an organization like this one allowed the group to mobilize their expertise together and prioritize the needs of the families that the project could meet. Nathalie greatly appreciated the collaboration with Yapouni: “Yapouni did an excellent job of organizing our ideas and observations into a map of the patient’s trajectory, which allowed us to see the big picture and move forward with the project,” she says.
The next steps in the project will certainly see some very promising avenues for implementing educational technology, with the hope of helping young patients and their parents put words to the difficulties they may encounter along their journey, and navigate through these different stages.