One might not think of speech-to-text services as part of patient care in a chemotherapy infusion center, but because of a unique partnership between transcribers at West Virginia University and a narrative medicine storytelling study at the Mary Randolph Babb Cancer Center, patients received first-person stories as part of their treatment.
I am a writer with experience working in narrative medicine, a discipline that considers how narrative competence fortifies healthcare. Research has shown that expressive writing not only has therapeutic benefits for patients but can also reduce physical pain and encourage patients to participate in the creation of important advance care directives. Working with partner physicians, my team embarked on a two-year study to see how expressive storytelling could affect the quality of life for rural patients with cancer.
The question became, how could we feasibly accomplish our task?
In the infusion center, I sat one-on-one with patients and used soft prompts to help them tell stories from their lives. Some talked about their cancer diagnoses; however, many simply told of the lives they’d led, including stories about their work, their families, their faith, their hobbies, and their favorite foods. These patients had important stories to tell, but they did not have the training and experience to turn their lives into meaningful artifacts they could share with their loved ones. In these sessions, I recorded what the patients said so that these oral histories could be drafted into first-person written accounts that I would co-create with the patients.
I have no background in transcribing, and quite frankly my attempts to transcribe these recordings were arduous and riddled with inaccuracies. I needed help and didn’t know exactly what to do next.
Luckily for me, I knew that the disability services office on my campus provided transcribing for students who were Deaf and Hard of Hearing. Could they maybe help me?
In meeting with these transcribers, I found important allies in the work I was doing. First, they were already HIPAA compliant, so it made integrating them into the study seamless. Second, they could help create quick, accurate transcripts during down times in their schedules, allowing me to focus on what I do best, which was working with the patients themselves to reshape the transcripts into stories.
The transcribers I worked with took enormous care with the project, and we got to meet from time-to-time to talk about the work. They seemed excited to work on something that was not only different but clearly meaningful to people we were working with. As the land grant university in our state, West Virginia University’s mission includes serving the people of our state, and this project was one unique way that transcribers participated in this service.
Together, we created more than sixty stories for patients with cancer, and are now piloting expressive writing studies with other patient groups. Thanks to this partnership, I have been able to help produce many more stories, and higher-quality stories, than I could have created alone. The quality and care of those transcripts is reflected in each and every story I’ve presented back to patients, and patients and their families have been grateful for the stories we’ve made together.
Now, as I work on the teams for these new studies and write grant proposals for the research, I always budget for my transcribing collaborators, because I see their work as essential to these projects. Together, we’ve made a great team, and we’ve helped people at a very significant crossroad in their lives.
RENEE K. NICHOLSON is the author of Roundabout Directions to Lincoln Center and co-editor of the anthology Bodies of Truth: Personal Narratives on Illness, Disability and Medicine. She is on the faculty of the Programs of Multi- and Interdisciplinary Studies at West Virginia University where she collaborates on Narrative Medicine projects with WVU Medicine. She is the 2018 recipient of the Susan Landis Award for Distinguished Service to the Arts from the WV Division of Culture and History.