Seattle Children’s Hospital

Role

UX Research & Design

Date

Jun 2020 - Oct 2020

INTRODUCTION

Pediatric cancer families can stay in the hospital for months receiving treatment. The discharge process can be stressful for families because they are solely responsible for their child’s care. For my capstone project, I worked closely with my wonderful team to find ways to enhance the pediatric cancer discharge experience. 

As the COVID-19 pandemic took over halfway through our project timeline, I quickly learned how to adapt while still producing the best results in the given situation. I gained valuable experience working and collaborating remotely. The figure below outlines the breakdown of the project:

Research

To begin the research process, my team and I conducted thorough background research at Seattle Children’s Hospital to understand the healthcare setting we were designing for. We conducted 4 subject matter experts interviews, learning about end to end Bone Marrow Transplant (BMT) experience and began to identify the touch points within the process. We also conducted various artifact walkthroughs of discharge related materials to gather context about the resources and materials used by nurses and patient families. All this research provided for an educated springboard for my team and I to begin interviewing 14 different stakeholders to gain a better understanding of the discharge process from the perspective of those who are most impacted: the nurses and patient families. As we spoke to our participants, we set out to answer our research question:

“How can we create a discharge experience that is positively engaging
and empowering for pediatric cancer patient families?”

After interviewing 11 nurses and 3 patient families, we carefully coded our interviews with Atlas.ti, and synthesized our findings through group discussion. Through these conversations, we developed a working definition of a successful discharge and have identified several barriers; findings outlined in the figure below:

We learned that successful discharge depends on both the work done behind the scenes and work done with patients. The ability to account for big picture planning, collaborate effectively and adapt to patient needs contribute to successful preparation behind the scenes. In addition to the work that helps facilitate discharge, patients and staff value interactions that build a strong foundation for care and promote education. Several challenges can prevent successful discharge, including a lack of cohesion, team disconnect, and barriers to communication.

Design Decisions

Through group discussion and deliberation, we surfaced the most promising ideas from our individual brainstorming activity, then presented these ideas to each other for critique. For each idea, we discussed both the feasibility of the solution and the potential for that solution to positively impact our stakeholders. We also sent out Concept Evaluation surveys to our stakeholders to gauge which solutions would best address the current barriers to success.

To help us decide on whether we should pursue the education tracking system or the take-home schedule, we analyzed the pros and cons of both solutions:

Ultimately, we decided to move forward with the take-home schedule solution as it directly impacts patient families and provides a feasible opportunity to produce a deliverable that can be integrated into Seattle Children’s current discharge process.

Final Design Solutions

To address the needs and goals surfaced from our research, we decided that our final solution will go beyond just designing a take-home schedule. We added two more parts to our design solution to enhance the pediatric discharge experience to the best of our ability:

1. Take-home schedule, worksheet activity to guide families in creating a schedule for their first hours and days at home

2. Journey map providing additional context to the discharge process from the patient’s point of view

3. Actionable recommendations to configure Epic, the patient charting system

Illustrated below are the specific goals that we set to achieve by designing each factor of the solution:

1. Take-home schedule

From our conversations with nurses and patient families, we found that patient families struggled during their first night at home. Many patient families created schedules for themselves after being discharged to help them keep track of the care they needed to provide for their children. One participant noted:

The take-home schedule worksheet is a guided activity developed to support patient families in preparing to care for their child after discharge. The worksheet will support families to proactively develop a plan for themselves, allow caregivers to take advantage of nursing staff support, alleviate stress by structuring responsibilities, and encourage them to find time for themselves. Below is a snapshot from our low-fidelity mock up process of the take-home schedule, we worked to assess different elements of a schedule that would best support the needs of patient families in a pen-and-paper setting.

Below is our final version of the take-home schedule:

The first page of the worksheet guides families through a series of steps to generate information that will shape their schedule their first week post-discharge.  Each step aims to strengthen their confidence and familiarity on how to approach home care. We’ve broken down this first page into 3 main steps.

1. First step prompts the family to brainstorm their everyday lifestyle activities and the home care activities they are now responsible for. 

2. Second step, a checklist of all the necessary discharge materials is written out for clarity and reference. 

3. Last planning step walks the family through how to approach making the schedule with all the information generated so far. 

Also, there is an additional space for personal notes and reminders is at the bottom.

The next page of the worksheet activity gives patient families a space to consolidate information and organize their schedule. 

The first day’s schedule is broken up into 2-hour chunks to eliminate ambiguity in care by setting up a detailed schedule with small time increments. 

Since the schedule for day to day care will look similar, the following days are allotted spaces on the side to reflect changes in medication and upcoming appointments. And again, there is additional space for important phone numbers at the bottom for quick reference.

2. journey map

The patient discharge experience is a complex journey composed of many moving parts. This complexity can act as a barrier when trying to clearly understand all the steps and touchpoints that contribute to a successful discharge. Consolidating the different pieces of the patient discharge experience in a journey map helps those involved gain a better understanding of the bigger picture. The journey map focuses mainly on the patient experience but highlights some touch points that are existing pain points between staff. Below is our low-fidelity mockup of our journey map:

After a few iterations, we polished our journey map, displayed below:

The journey map breaks down the entirety of discharge process in a consumable way. It highlights all the important steps and touchpoints, provides us an opportunity to contextualize our research findings, and surfaces opportunities to streamline the process. This artifact will be used by program managers to gain buy-in from leadership to develop further solutions in this space.

3. Recommendations for Epic

As Seattle Children’s Hospital migrates over to Epic to chart patient information, we wanted to use this transition as an opportunity to provide recommendations for the software to be configured in a way that will promote comprehensive documentation surrounding patient education. Based on our interviews with nurses, we found that the current charting system does not fully support the staff in documenting where patients are with their education, making it difficult to reference the documentation at a glance.

Our goal is to help bedside nurses better identify potential gaps in education to fully prepare families before discharge. Based on our research findings, we concluded that these four recommendations could enhance the discharge experience, especially in regards to patient tracking:

Over the past five months, we were able to utilize the knowledge and skills we have gained through our studies in HCDE to develop a user centered solution that drives a positive impact on patients and their families. 

Reflection

I explored a completely foreign problem space in the healthcare industry and was able to grow as a UX designer and researcher. I can personally say that I have learned to be more empathetic as we interviewed and gained insights about nurse and patient experiences within the Bone Marrow Transplant (BMT) and Hem/Onc cancer units. Although this project experience was impacted by COVID-19, it gave me the opportunity to learn about my ability to adapt. Without the opportunity to be physically present in the environment that we were researching and designing for, these obstacles pushed me to be innovative and make the most out of what could be accomplished in our given situation.

Prior to this project, I always saw myself as just a designer; I love the act of creation and the appreciation for visual aesthetics. However, this project was the perfect opportunity for me to dive deep into an extremely intensive research process; which has allowed me to learn the importance of good research and representing our users well. I am thankful for this, as it has changed my entire mindset as a designer, pushing me to be educated and find ways to support my design decisions with sound research. 

If we were given more time, I would revisit the research process and attempt to gain more insight on the patient family experience since we were only able to connect with 3 patient families. Each patient family interview was extremely personal, and I learned a lot about how to be an active and attentive listener by being in these emotionally vulnerable conversations. I will always appreciate how these families completely opened up to me, pouring out their life stories to me with tears, and if I’m being honest, I also caught myself tearing up a few times during these interviews. Going forward, I’ve made it my personal goal to represent the voices of users to the best of my ability because they deserve to be heard.

I would like to thank our sponsor, Staci Heldring, for her constant support and guidance through this project.