Jocelyn Bessette Gorlin, Alissa Line, Angie Boyd and Eddie Gonzalez
A few of the questions people have asked each other in the StoryCorps® Legacy family interviews facilitated in the hematology department at Children’s Hospitals and Clinics of Minnesota include: “Why do you love me?” “How did you feel when they told you I had hemophilia or sickle cell disease?” “What kinds of things do you like to do together?” “What’s the most challenging thing about living with hemophilia or sickle cell disease?”
So far, by sharing their stories, families have made meaning of their experience and embraced the program. The program soon will be implemented in other clinics at Children’s in the near future.
Maybe you’ve heard of StoryCorps® or listened to their stories. StoryCorps® is a national oral-history program sponsored by National Public Radio that gives people of all backgrounds and beliefs the opportunity to record, preserve and share their life stories. So far, more than 80,000 people have recorded their story since 2003. Many people have heard of StoryCorps® by listening to its weekly broadcast on NPR.
StoryCorps® Legacy focuses on the stories of families of people affected by serious or chronic illnesses. Legacy partners with several hospitals and specialty health care centers, nationwide. Because Legacy is privately funded by a grant, there is no direct cost to utilize the program.
Children’s currently is facilitating Legacy interviews with the families of kids who have bleeding disorders such as hemophilia and von Willebrand’s disease and families of children with sickle cell disease. The partnership with the sickle cell population is particularly important because, historically, there are few research projects or special programs that have been available to these families.
How did StoryCorps® Legacy come to Children’s?
In 2014, we applied to Legacy to be its partner. Throughout the year, legal negotiations occurred between Children’s and Legacy. Monthly meetings were held by a core Legacy team to define goals and discuss recruitment. To accomplish all of this, we needed to adopt a multidisciplinary approach, including the input from medicine, nursing, social work, administration and the legal department.
Finally in March, two enthusiastic members of the Legacy staff, Eddie Gonzales and Gautam Srikishan, flew to Minneapolis from New York for a four-day orientation. On the first day, they presented an overview of Legacy to the entire hematology staff (see photo). The subsequent three days involved Eddie and Gautam teaching our core Legacy team members how to use the recording equipment, which is housed in a portable rolling backpack. The recording equipment then was left with us to facilitate family interviews for the next three months.
What is it like for the families to participate in Legacy interviews?
Families who express an interest are sent an orientation packet that includes possible questions to ask in the interview. Families then choose two or more family members or acquaintances to participate in the conversation. On the day of the interview, they arrive at the clinic and are escorted to a quiet room located below the clinic that’s designated for audio recording. One of our trained core Legacy team members then facilitates the conversation by audio recording it and assisting participants to ask each other questions. Each family spends about 1½ hours with us, but the actual recording time is 40 minutes. There is no video recording, but we do take fun photos at the end of the interview.
What happens to the recordings?
A CD is made from the audio recording, and the families can choose to keep the recording, or they may share it with Children’s, StoryCorps®, and the Library of Congress in Washington, D.C. Sharing their story can help other families also dealing with chronic illnesses. For example, we hope to use these stories in creative ways such as placing the stories on iPads in clinic so other families may learn what it’s like to raise a child with a bleeding disorder or sickle cell disease.
For African American families, there is an added option for sharing their story with the Griot Initiative. “Griot” is a French word that refers to the tradition of oral history in West Africa. A griot is a West African storyteller. Presently there is a new building in construction at the Smithsonian in Washington, D.C., called the Museum of African American History and Culture. Families can choose to send an additional copy of their CD to be archived in this new building. This has been a popular option particularly for the families of children with sickle cell disease as sickle cell predominantly affects people of African American descent.
Who is involved in the project?
The partnership between Legacy and Children’s could not have been possible without the effort of many people, specifically the core Legacy team who are presently facilitating the interviews. This team includes Elizabeth McDonough, RN; and Alisa Linne, LICSW (both from the sickle cell program); Jill Swenson, LICSW; and Jocelyn Bessette Gorlin, RN, CPNP (both from the department of hemophilia and thrombosis); Angie Boyd, MBA; and Stephanie Davis (both in administration in hematology). Medical staff includes Susan Kearney, MD; and Margaret Heisel-Kurth, MD (medical director and co-director of the department of hemophilia and thrombosis) and Stephen Nelson, MD (medical director of the sickle cell program).
The dedication of this team has been humbling. McDonough, for example, has 30 years of experience working with the families in the sickle cell clinic. She worked tirelessly to recruit families, read numerous books of published StoryCorps® interviews and became the Legacy expert-in-residence. Boyd spent hours coordinating the logistics of the orientation schedule. Davis sent letters of invitation to hundreds of families, scheduled appointments and coordinating all core Legacy team members’ schedules.
The next clinic group at Children’s to partner with Legacy will be the International Pleuropulmonary Blastoma (PPB) Registry, also in the department of cancer and blood disorders, starting Aug. 7, when they host the fifth meeting for patients and families affected by this rare childhood lung cancer. The PPB registry’s participation will be novel because in addition to audio recordings they plan to use video technology to facilitate some interviews for international families who cannot make the meeting. The coordination between Legacy and the PPB registry is being coordinated by Gretchen Williams, Ann Blake with Yoav Messinger, MD; and Kris Ann Schultz, MD. Trisha Anderson is the family liaison. For more information, contact Anne Blake at (612) 813-7115.
Interviews for the bleeding disorder and sickle cell families continue at Children’s each Thursday until the end of July. If you or someone you know is interested in obtaining more information or wish to participate in Legacy, contact Stephanie Davis at (612) 813-7483. There is some flexibility in scheduling, so call to inquire.
Special thanks to additional individuals who made the collaboration possible: Rebecca Wright, MPH; Susan Sencer, MD; and Vicky Schaefers, CNP (hematology/oncology); Clark Smith, MD; Becky Bedore and Christa Steene-Lyons (senior administration); Nancy Martinson and Cory Fitzpatrick (legal); Lisa Buchal (social work); Madeline Riggs (communications); Seth Kanne and Amy Hebert (Star Studio)