Beth Lenegan, PhD, Director of Pastoral Care at Roswell Park Cancer Institute, explains how StoryCorps Legacy will benefit RPCI patients.

Giving a New Voice to the Patient Experience

Wednesday, June 4, 2014 - 3:44pm
Director, Pastoral Care

If you listen to National Public Radio, it’s likely you’ve heard about StoryCorps, the non-profit initiative that gives Americans the chance to share their most meaningful stories and life experiences through personal recorded interviews. Since the program was founded, more than 90,000 people have participated across the U.S.

Thanks to a generous gift from Philip H. Hubbell, we’re very pleased to bring StoryCorps to Roswell Park. Now, patients and their loved ones have the opportunity to tell their stories with support from the Pastoral Care team.

How does it work? A patient or family member contacts Pastoral Care to let them know they want to participate—or, our team will reach out to patients and loved ones to encourage them to take part in the program. The storyteller than selects someone close to them—a family member or friend—to be the interviewer. The completed interviews are recorded on a CD, which is given to the patient, and a copy of the recording is also kept for posterity in the Library of Congress. Some stories may be featured on StoryCorps’ website or in other ways. However, participants can elect for their interviews to remain completely private.

These interviews are a candid conversation, with both storyteller and interviewer actively participating. The loved one may have already heard the patient’s story. However, we find that the StoryCorps setting gives both participants the chance to gain new perspective on the experience they are revisiting.

Our very first StoryCorps interview was done by Alison Flakes, who was diagnosed with stage III breast cancer in 2009. During nine months of treatment, she kept her illness a secret from her colleagues. Then earlier this year, she developed acute myeloid leukemia.

Her sister, Florence Flakes-Rozier, agreed to interview her. During a 40-minute recording session in Alison's hospital room, the sisters had an intimate conversation about Alison’s children, her career, the two sisters’ mother, family reactions to her being sick—and a couple of tearful moments.

“If there’s ever a time you could sit back, relax in a very intimate way and talk about your hopes, dreams, disappointments, your life, your family, your bucket list… It’s a wonderful format, a vehicle to do that,” she later shared with us. “The self-reflection, retrospection—it was one of the most beautiful experiences I’ve had. It was like an exciting diversion. It was my story.”

We see StoryCorps as a natural fit within the patient- and family-centered care model at Roswell Park, and we hope you do, too. If you or a loved one would like to take part in StoryCorps at Roswell Park, please contact the Pastoral Care team at 716-845-8051