AYA Navigation During Pandemic

COVID-19 has presented some challenges for us in our work in Utah as AYA Patient Navigators. Back in March, we were both asked to start working from home as our hospitals tried to limit the amount of people physically coming through the doors. This new arrangement was a little concerning because we typically spend so much time interacting with patients face to face in clinic or inpatient rooms. We were worried about how our work would look while working from home.

Prior to these changes, patient navigation had been limited to in-person visits and phone calls. When working from home we quickly realized the great value of face-to-face interaction for building rapport and assessing patient needs. After extensive coordination, we finally gained approvals to conduct video call visits with patients. We thought this would be the best answer, but have actually encountered further challenges with it. We have found that new patients may sometimes feel uncomfortable having their initial visit with us over video and most have expressed a preference for a phone call when we give them the option. Our patients tend to agree to a video call after we’ve already had an initial phone call with them or if we’ve already met them in-person in the past. Building rapport and initiating important conversations with new patients seems to be more easily accomplished in clinic.

The pandemic has also affected HIAYA’s social programming. Since April 2019, HIAYA has hosted a monthly social group for HIAYA patients and survivors. The February event plan was to attend an ice hockey game as a group; however, this was quickly cancelled as precautions increased. As with many other AYA programs nationwide, HIAYA had to shift to virtual social groups. While it hasn’t been without its challenges, this has been a positive addition to HIAYA and will develop to become part of regular programming moving forward. It will enable AYAs living across the Intermountain West and patients who are admitted to a hospital to connect with others in the program remotely.

COVID-19 has led to emotional distress for patients. One of our patients posted on HIAYA’s closed Facebook account asking if others in the group were experiencing depression and anxiety. This post solicited 16 thoughtful responses from other AYAs and gave us as patient navigators an opportunity to step in and provide resources and assistance. When reaching out to another patient to check in, Tomoko found out the patient had lost her job due to COVID-19 and was severely depressed at home. Tomoko communicated with the patient’s care team and was able to help her schedule a virtual visit with the supportive oncology provider. Another patient expressed her stress and anxiety stemming from being immunocompromised and having to leave the safety of her home for medical appointments at the hospital. Another patient wasn’t able to have her family by her side during her last chemotherapy treatment due to the zero-visitor policy. On her social media account, she requested everyone to wear blue for her as support (representing her favorite college sports team). Tomoko and I took photos wearing her team’s colors and texted them to her with an encouraging message. We’ve been trying to do everything we can to support and navigate patients through these newfound challenges.

Finally, COVID-19 has brought mixed emotions for us as patient navigators. While we are glad that we can work efficiently and effectively from home, we wish we could physically be with patients so we can better discern their needs and build relationships. It can also be hard feeling isolated from coworkers but we have been utilizing video chat to stay connected. We are very glad to have the Teen Cancer America network to share in these sentiments and find support and ideas during this unique time.