Design through stories: Experience-based design in pediatric healthcare

Blood and marrow transplant/cellular therapy unit

We incorporated experience-based design while working on the redesign of the blood and marrow transplant/cellular therapy (BMT/CT) unit at The Hospital for Sick Children (SickKids), which provides care for patients from across Ontario and Canada’s Atlantic provinces.

This unit is home to some of SickKids’ most vulnerable patients, who stay in isolation rooms for weeks to months at a time. They require stringent infection control measures because of their compromised immune systems. In the unit, children can receive treatment for leukemia, lymphoma, aplastic anemia, sickle cell disease, and other conditions.

Staff on the BMT/CT unit have delivered care in the current space for 25 years. Patient rooms are small and require upgrades to support new technology, individual washrooms, physical therapy, and comfort for patients and their families.

During the beginning stages of our redesign of the unit, which took place prior to the COVID-19 pandemic, we had the opportunity to use one larger patient room as a prototype. We used the room to sample different technologies and materials. It enabled care teams to think about how they might work in the new space.

This project gave us the opportunity to engage with end users—children, youth, and their families—which provided a key element of the design process. The experience of patients or caregivers in this type of environment is critical because the extended hospitalization allows people to think about how they might change the space. We knew we needed to hear their perspectives. 

Engagement: Learning about experiences

When it comes to experience-based design in pediatric healthcare environments, you need to approach the engagement process carefully. Aside from being empathetic—especially when working with current patients and their families—here are some ideas to consider, taken from our work on the BMT/CT unit:

• Journey mapping: Can you learn about milestones before the engagement starts? Before meeting with users, we asked care team members about the major milestones of a patient’s experience, from arrival to discharge. This provided us with a structure for our interviews with users, where we could later walk through a patient’s journey. Then, we placed posters on the wall with five different steps in a patient’s journey, asking questions like, “What was the experience like? What would you wish was different about the experience? What were positives and negatives about the experience?” Patients and families wrote their experiences on sticky notes and attached them to posters.
• Preparation: Before you begin your sessions, make sure you have materials ready for people to describe their patient journeys. Bring samples so users can pick their favorite tiles or floor materials. Provide paper and drawing tools for users to illustrate what their experience was like or to sketch out an ideal room design. For some children and youth in our SickKids session, we asked how they’d design a new patient bedroom for the next patient that needed treatment.
• Dual format: It’s useful to conduct interviews via a dual format, where you book appointments with some people but also provide an open, drop-in session. This provides a hybrid of structured and unstructured engagement and gives options.
• An invitation to share: You may not even need to ask many questions during an engagement session—it’s more about inviting people to share their experiences in an informal way. Be prepared for some emotional moments. While working on the project, it touched us to hear some of the sacrifices that caregivers made for their children, including caregivers that slept over for months or traded shifts with their partners so they could maintain their jobs while their children were in hospital. Caregivers told us they didn’t want to leave their child’s room because they didn’t want to miss important information from a doctor. 

From stories to design details

After conducting your engagement, you can look at ways to enhance your design with the feedback you have received. Dive deep and immerse yourself in that experience. Imagine every possible way you can make the experience better for patients and the family members (whose well-being is so important, given the important role they play in the care of their child).

For example, rather than just painting a wall, could you add a marker board for children and youth to doodle on during their stay? Your design decisions can help create something more than a space of healing.

A well-rounded process

In pediatric healthcare, an experience-based approach to your design can lead to a well-rounded process that reflects the unique needs of young patients and their families. We’re driven by the balance between leaning on our technical knowledge and incorporating stories we hear from families. While working on the BMT/CT unit, we always put ourselves in the position of the people we were designing for—such as the child and caregiver staying in the hospital for weeks.

When projects like these, it’s all about listening. And the more you listen, the better you design.