When Leah Kroon, RN, MN, wanted to know how to deliver an educational message to her teen and young adult patients with cancer, a clear answer came back from the focus group she polled: YouTube.
Kroon, clinical nurse specialist at Seattle Children’s Hospital’s Adolescent and Young Adult Oncology Program, began talking with patients two years ago about effective communication methods for cancer care.
“[They said] anything they could do on their computer or with a handheld device,” she said. “We knew they used social media. We thought the YouTube-style video was interesting.”
Patients also indicated they wanted to hear about the cancer experience from someone their age.
“It’s a very isolating experience to be a teen or young adult with cancer,” Kroon said. “No matter where they go, they are a minority.”
According to a statistic on one of the video segments, 72,000 teens and young adults are diagnosed with cancer each year. Those cancers can include non-Hodgkin’s lymphoma, leukemia and sarcoma.
Leah Kroon, RN
Kroon envisioned a YouTube video series with short, pithy segments addressing specific topics of interest to young adults and adolescents with cancer. Topics include what it’s like to lose your hair, how to deal with emotional parents and dealing with the side effects of chemotherapy, she said.
“I think people are used to getting information in very short, fast-paced visual content,” Kroon said. “So that’s why we decided to do that.” The video segments, called “Good Times and Bald Times,” went live in June 2011.
”This generation of teens and young adults is a connected group that relies heavily on technology for their information,” said Rebecca Johnson, MD, medical director of the AYA Oncology program at SCH. “We identified a real need for this type of resource, and we wanted to utilize new media to provide education and psychosocial support to other cancer patients.” Johnson spearheaded the program and also is a cancer survivor.
The videos aren’t reserved solely for patients at SCH; in fact, Kroon and her team of physicians, nurses and social workers hope to reach a much larger audience. “We wanted to make the content widely available,” Kroon said.
Co-facilitator Linda Wolf, who founded Teen Talking Circles, worked with Kroon to gather eight patients who agreed to spend time in sessions talking about their cancer experiences. All but one patient was cancer free at the time of the filming, which took about six weeks. Issues discussed were planned out ahead of time. Kroon then had the unique, months-long task of editing the segments, something quite outside the realm of a nurse’s typical duties but enjoyable, she recalled.
“It had to really drive the point home,” she said. “We sort of worked on things like, ‘What’s the appropriate music for this section?’ ‘How do we not make this part morbid?’ and working on setting the tone.”
She recruited participants by asking the adolescent/young adult oncologists for patients who might be interested in sharing their stories. Patients who said yes were hoping to help others their age to know they’re not alone.
“It is so important for these teens and young adults with cancer to know that there is a peer out there who understands what they are going through and that support is available,” Johnson said. To advertise, Kroon reached out via Facebook and the hospital’s media channels.
“Little by little, I run across news blurbs on online journals, so people are seeing them and writing about them a bit,” Kroon said. “We’ve done some stories about them in our in-hospital newsletter and website and so on. We’ve had some good feedback from some patients, although I would like to get more feedback from patients.”
Kroon said her role as CNS is interesting, compelling and creative. She enjoys the development of palliative care and working with the Seattle Cancer Care Alliance with which the hospital is affiliated. She’s proud the program recently received an art grant from Lance Armstrong’s LIVESTRONG organization.
In addition to patients and parents, Kroon educates other nurses, staff and the general public. “It’s an interesting public health issue because the mortality rate [for adolescents and young adults] haven’t improved since the 1970s,” she said. “So we have a message to get out to the community as well as taking care of our own patients.”