The power of digital storytelling featuring recipients and donors from the Living Donation Storytelling Project

Emily Wood Donation Stories

By Jessica Nunez, Intern

On November 20, 2020, Dr. Waterman gave a talk titled “The Power of Digital Storytelling to Educate, Empower, and Engage Patients and Prospective Donors” as part of a virtual series hosted by the Terasaki Institute for Biomedical Innovation. You can view the full talk here. The talk highlighted the Transplant Research and Education Center (TREC)’s Living Donation Storytelling Project, which aims to share the real-life testimonies of living kidney donors and recipients.

Dr. Waterman began the talk by explaining that patients cannot benefit from transplant if they lack the knowledge that living donation is an option. There are many patient audiences typically left behind due to factors including:

  • Poor knowledge of renal replacement options or living donation
  • Questions and fears
  • Inability to drive to a transplant center to learn
  • Lack of access to telehealth
  • Primary language other than English

Outside of the kidney patient community, so many people have never met a living donor and are unaware that multiple generous individuals safely donated a kidney to someone in need each year.

It is critically important to create health education for the general public, and especially for vulnerable communities so that more patients can receive life-changing living donor kidney transplants. Dr. Waterman highlighted patient recommendations for improving their basis of knowledge including, teaching providers to acknowledge the patient as an active participant in creating the care plan and providing time for patients/potential donors to ask questions in order for them to consider transplant as an option.

Dr. Waterman discussed ways to build an education pipeline for both patients and donors. The first step is to design general transplant information to the public and potential living donors. While the information can be given to patients on an individual basis, education in nephrologists’ offices and transplant education in dialysis centers are also valuable in order to reach different target audiences including dialysis patients. It offers a new opportunity for patients to become educated about the alternative choices they have for a healthier, longer lifestyle. If patients are currently on the waitlist or even at the start of transplant education, obtaining general living donation education can come a long way to clarify any lingering doubts. This form of education pipeline can ensure transplant decision-making options and equity in access to quality information.

The talk also focused on comparing two different kinds of education: storytelling and traditional transplant education. Storytelling is patient-created content that includes informal narratives and experiences coming from individuals who are not authorities. Traditional education is characterized by provider-prescribed content and formal presentations coming from authorities. While these two types of education are different, they are both important and complementary tools for patients.

In addition to the real-life stories from the Living Donation Storytelling Project, Dr. Waterman also talked about My Transplant Coach – which is a web-based interactive decision that helps patients learn about their renal replacement options. It is a great option, as it is simplified initial education for patients who want to learn more about living donation. Work is currently underway to create a new animation specifically for kidney paired donation.

The Living Donation Storytelling Project is a great form of health education, as it improves patient empowerment and health. The use of storytelling is supported by multiple

multiple researchers in diverse health areas. Dr. Waterman discussed research showing that storytelling interventions have improved self-efficacy for diabetes self-management among type 2 diabetes patients, created reductions in blood pressures for the storytelling hypertension group, and doubled vaccination rates for combined peer-expert delivered narrative groups. The LDSP builds on these past works and is among the first uses of storytelling in transplant. Additionally, it is good for patients because it offers a perspective on transplant from individuals who have received or donated one. In times of COVID-19, the Living Donation Storytelling Project has become more important now because neither patients can meet in person nor support groups can be organized. It is a new form of health education that potential donors and recipients can explore from the comfort of their homes.

Dr. Amy Waterman’s talk highlighted the storytelling project created by her and her research team that serves as a strong resource for health education. While the storytelling project has grown into a library of various testimonial videos, it still aims to develop in multiple languages; that way, it can also become a resource for minority populations including the Spanish-speaking community. Nonetheless, the Living Donation Storytelling Project is an important project that empowers patients in their transplant decision-making process.