The Post-It Note Version
caring for caregivers in neuro-oncology through journey-based and relational support resources
Project Partners // Anya Zimmerman-Smith, Diana de Rada, Nathan Chun, Riley Knowles
Project Timeline // Fall 2020
Introduction
The Brain Tumor Network is a not-for-profit free brain tumor navigation resource in the United States. The organization is not affiliated with a particular hospital, and instead provides support to all patients and caregivers through the practical, financial, and emotional challenges of navigating a brain tumor. They offer a range of services including helping patients understand their diagnosis, exploring second opinions, discovering clinical trials, investigating treatment options, coordinating speech and physical therapy, navigating insurance claims, locating financial support, and planning end-of-life care.
This work was conducted as part of an independent study in Human Centered Design. Our design challenge was to identify an unmet need of their patients and present potential solutions. The core of this work was in defining key areas of improvement through a deep dive into the organization.
Discovery
We began our work by conducting a series of interviews with nurse navigators, social workers, patients, and caregivers to better understand the services provided by the Brain Tumor Network. All of their services are provided remotely, which gave us the opportunity to shadow some of the phone calls between nurse navigators and patients or caregivers.
These interviews led to a series of guiding insights that we shared with the team at the Brain Tumor Network (BTN). This helped us to know which unmet needs might be most ripe for ideation.
Nurse navigators believe their value comes from providing information, but to patients and caregivers, their value comes primarily from the emotional support and connection they provide.
The nurse navigators and social workers we interviewed shared that their primary means of supporting patients and caregivers was through translation and care coordination. However, patients and caregivers focused on the emotional support they provided, and how valuable it was to have someone who understood what they were going through.
Patients and caregivers are asked to make the most important decisions when they are least informed.
In the early stages of the brain tumor journey, patients and caregivers are expected to make decisions that can shape their treatment and prognosis. This puts an enormous amount of weight on patients and caregivers who feel they don’t have enough time or knowledge to make an informed decision.
Medical information is sorely in need of redesign, and it’s language is almost impenetrable to those who do not “speak” it.
Patients and caregivers reported feeling like their doctors spoke a different language. One caregiver shared, “What you read on the internet, I don’t understand a lot of that stuff. I’m an accountant.” The team of nurse navigators at BTN are essential in helping patients and caregivers “translate” this information.
Caregivers are heroes at the center of the brain tumor care.
Due to the cognitive and physical decline associated with brain tumors, caregivers often take on an instrumental role of navigating the patient’s care. Although many organizations taut patient-centered service offerings, with brain cancer, equal attention must be paid to the well-being of the caregiver.
In the early stages of our process, we created a stakeholder map to identify all those involved in the care journey. We found the number of people that patients and caregivers were expected to interact with on a regular basis overwhelming.
Through interviews, we identified that many caregivers, overwhelmed by the complexities of managing this disease, maintained a binder of medical records and other helpful information.
During a co-design session with some of the nurse navigators from BTN, we asked them to draw their own stakeholder maps. We found that caregivers were often at the center of care management, often times expected to maintain communication with many stakeholders as the patient’s disease progressed.
The caregiver-centered care model was one of the proposed prototypes to both honor the important role that caregivers play in disease management and help to organize the network they engage with. A paper and digital version were presented as part of a “Welcome to BTN” package that could be offered to new clients of the organization. Additionally, a digital version could be shared with the BTN team to help them efficiently coordinate patient care and keep track of relevant stakeholders as every patient is treated at a different hospital and has a different insurance provider.
Prototyping
“Mind boggling to see all of the interconnectedness. If I had this at the start of the process, it would have been easy to replace titles with names of people I have interacted with. It helps bring the network into focus.”
-Caregiver
Brain Tumor Guide
During our exploratory phase, we interviewed a patient who received the news of her brain tumor diagnosis by seeing her pathology report in her online medical records. The nearly indecipherable pathology report demonstrated to us just how overwhelming the early stages of diagnosis can be for patients and their families. We wondered why patients weren’t provided with a more personalized guide to their diagnosis. Instead, patients are often left to piece together complicated information independently to understand their prognosis and next steps.
This led us to design a Brain Tumor Guide that could be shared with new patients to guide them practically through the important next steps. By focusing on the information relevant to upcoming decisions, we hoped to create a “pathology report” that was more approachable.
Welcome to BTN Guide
During interviews, we also discovered that many patients come to BTN for a particular service, not aware of all the other free services available to them that they might need throughout different parts of their journey.
The Welcome to BTN Guide was developed in hopes of gently informing patients and caregivers what the journey might look like and what help is available to them. The non-linear path was used to show that this is a journey, and to prevent overwhelming patients with a long list of services they might need. This guide has been implemented on the Brain Tumor Network website.
Navigation Liaison
The caregivers we interviewed reported experiencing an immense burden during appointments to understand and record the information shared by the patient’s medical team. Left with many questions, they would often call their BTN nurse navigator after the appointment for clarification and advice. However, the information they were able to relay was often incomplete, since they weren’t able to remember or record everything that was said.
During the pandemic, many of these consultations occurred online. This led us to propose BTN offering a new service where patients or caregivers could invite their nurse navigator to attend their virtual appointment. Prior to the appointment, they could specify what role they hoped their navigator could play - whether taking notes, providing emotional support, or answering questions. This both helped caregivers feel supported during the appointment, and saved navigators the time in translation after the fact.
The idea was incredibly well-received by patients and caregivers, and is now a listed service offering on the Brain Tumor Network website.