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It is not common for people to come across a living kidney donor, let alone consider whether they would ever donate a kidney themselves while they are alive. Narrative storytelling, the sharing of first-person narratives based on lived experience, may be an important way to improve education about living donor kidney transplants (LDKTs). Developing ways to easily standardize and disseminate diverse living donor stories using digital technology could inspire more people to consider becoming living donors and reduce the kidney shortage nationally.
This paper aimed to describe the development of the Living Donation Storytelling Project, a web-based digital library of living donation narratives from multiple audiences using video capture technology. Specifically, we aimed to describe the theoretical foundation and development of the library, a protocol to capture diverse storytellers, the characteristics and experiences of participating storytellers, and the frequency with which any ethical concerns about the content being shared emerged.
This study invited kidney transplant recipients who had received LDKTs, living donors, family members, and patients seeking LDKTs to record personal stories using video capture technology by answering a series of guided prompts on their computer or smartphone and answering questions about their filming experience. The digital software automatically spliced responses to open-ended prompts, creating a seamless story available for uploading to a web-based library and posting to social media. Each story was reviewed by a transplant professional for the disclosure of protected health information (PHI), pressuring others to donate, and medical inaccuracies. Disclosures were edited.
This study recruited diverse storytellers through social media, support groups, churches, and transplant programs. Of the 137 storytellers who completed the postsurvey, 105/137 (76.6%) were white and 99/137 (72.2%) were female. They spent 62.5 min, on average, recording their story, with a final median story length of 10 min (00:46 seconds to 32:16 min). A total of 94.8% (130/137) of storytellers were motivated by a desire to educate the public; 78.1% (107/137) were motivated to help more people become living donors; and 75.9% (104/137) were motivated to dispel myths. The ease of using the technology and telling their story varied, with the fear of being on film, emotional difficulty talking about their experiences, and some technological barriers being reported. PHI, most commonly surnames and transplant center names, was present in 62.9% (85/135) of stories and was edited out.
With appropriate sensitivity to ensure diverse recruitment, ethical review of content, and support for storytellers, web-based storytelling platforms may be a cost-effective and convenient way to further engage patients and increase the curiosity of the public in learning more about the possibility of becoming living donors.
Presently, over 740,000 people in the United States are living without functioning kidneys due to end-stage kidney disease (ESKD) [
Although increasing deceased donation rates is limited by practical and medical circumstances surrounding how individuals die, living donation rates are limited only by the number of healthy individuals who become aware, educated, and interested in donating 1 kidney while they are alive. Of the roughly 250 million adults in the United States, only 100,000 more individuals (0.04%) would need to agree to donate 1 kidney to eliminate the entire kidney donor shortage. Education strategies to increase LDKT commonly target patients and families using face-to-face educational sessions [
To expand the living donor pool, we need to reach beyond the walls of the transplant center to help patients share their interest in LDKT with more individuals and inspire more people who are still unaware of living donation to consider becoming donors. As few people know a living donor personally, we also need to help the general public realize that other people who look like them donate kidneys each year. Innovative strategies to educate and inspire more patients and potential living donors to consider living donation are needed.
Storytelling, the sharing of first-person narratives based on lived experience, is an educational approach that is authentic, emotional, and provides people with the opportunity to learn from others who look like them. Stories have the power to emotionally engage listeners, reach low-literacy audiences, and present complex information in informal and comprehensible ways [
Developing ways to easily standardize and disseminate diverse living donor stories using digital technology could inspire more people to consider becoming living donors and reduce the kidney shortage nationally. This study aimed to describe the development of the Living Donation Storytelling Project, a web-based digital library of living donation narratives from multiple storyteller types (eg, recipient, donor). There were 4 aims: to describe (1) the theoretical foundation and development of a web-based digital library using video capture technology, (2) a recruitment protocol to capture diverse storytellers, (3) the characteristics and experiences of the participating storytellers, and (4) the frequency with which ethical concerns in the content shared emerged.
The Narrative Theory supports the use of storytelling as an organic way in which humans naturally process and assign value to information, especially when it is presented by someone who resembles the listener [
On the basis of diffusion of innovation (DOI) theory [
As recommended by the transtheoretical model of behavioral change [
Social cognitive theory shows that people learn by observing others who look like them and by observing the consequences that others receive as a result of their actions [
The resulting Living Donation Storytelling Project web-based digital library [
Storytellers were individuals who had previously donated a kidney, recipients of LDKTs, family members or friends, or kidney patients seeking an LDKT. Storytellers were recruited via social media (Facebook, Instagram, Twitter, and LinkedIn), community outreach at support groups and churches, and referrals from kidney professionals and organizations (
Prompts were developed by our research team and grouped as story guides based on 6 transplant story types: recipient, donor, family/friend, exploring donation, in need of a kidney, and kidney ally. Depending on the guide, storytellers were offered 5 to 25 open-ended prompts that addressed their decision-making experiences, questions, needs, fears, and hopes, their donation and transplant experiences, how their lives changed after donation or transplant, and recommendations for potential donors.
Storytellers completed a standard media release for use of the stories, received reminders not to disclose any protected health information (PHI), and were supported with questions by a staff member (
Process flow of initial recruitment of storyteller to a completed story by the Transplant Research & Education Center.
After videos were submitted, transplant professionals (LH, SM, MA, and WB) watched each video and completed an ethical screening worksheet to check for PHI disclosures, about either the storyteller or anyone else, including their last name, addresses, transplant center name, social security numbers or medical record numbers, transplant date, or ESKD diagnosis date. They also screened for medical overgeneralizations or inaccuracies, pressuring language about donation or transplant, or foul language. Any problematic instances were coded by a timestamp and later removed by a video editor. The process flow of the storyteller’s path from the initial recruitment to the completed story is outlined in
An opportunity to complete a 32-question postsurvey assessing the storyteller’s experience filming their story was offered to those who had already completed and uploaded their stories. Those who completed a story received a voluntary postsurvey link in the email address that they provided. Surveys were collected using the Research Electronic Data Capture (RED Cap) software, with each storyteller receiving a US $25 gift card after completing their survey. Data were stored on a secure, password-protected UCLA server.
The survey assessed storytellers’ demographic characteristics (eg, gender, race/ethnicity, and age), level of education obtained, and type of story completed (eg, donor, recipient, family member, etc). Storytellers were asked what motivated them to share their stories (eg, to dispel myths, to help more people become living donors). On a scale from 1-very difficult to 7-very easy, storytellers were asked how easy or difficult filming and sharing their story was.
In total, 412 potential storytellers received an initial introductory email with a story link that was unique to their experience. Of those invited to participate, 34.7% (143/412) storytellers completed stories and, of these, 95.8% (137/143) completed a voluntary postsurvey. Among those who completed a story, 72.2% (99/137) of the storytellers were female, 76.6% (105/137) were white, 60.5% (83/137) were living kidney donors, and 81.0% (111/137) had a college degree or higher. About 8.8% (12/137) of the storytellers were Hispanic and 23.4% (32/137) were nonwhite (
Nearly all (130/137, 94.9%) storytellers were motivated by a desire to educate the public about living donation (
Storyteller characteristics (N=137).
Characteristic | Values | |
Age (years), mean (SD) | 49.6 (12.4) | |
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Male | 38 (27.7) |
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Female | 99 (72.3) |
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White | 105 (76.6) |
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Black | 14 (10.3) |
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Other | 18 (13.1) |
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Hispanic | 12 (8.7) |
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Living kidney donor | 83 (60.6) |
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Kidney recipient | 37 (27.0) |
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Family or friend of kidney recipient | 7 (5.1) |
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Patient on waitlist | 3 (2.2) |
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Family/friend of the patient on the waitlist | 2 (1.5) |
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Other | 5 (3.6) |
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High school diploma or GEDa | 6 (4.4) |
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Some college or vocational school | 19 (14.0) |
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College or vocational school degree | 60 (44.1) |
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Some professional or graduate school | 11 (8.1) |
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Professional or graduate school degree | 40 (29.4) |
aGED: General Education Development or General Education Diploma.
Storyteller motivations, barriers, and disclosure of protected health information (N=137).
Responses | Value | ||
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To educate the public about living donation | 130 (94.9) | |
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To spread awareness and help others | 110 (80.3) | |
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To make a difference in living donor recipient’s and donor’s lives | 109 (79.6) | |
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To help more people become living donors | 107 (78.1) | |
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To dispel myths about living donation | 104 (75.9) | |
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Storytellers who found filming a story difficult | 34 (24.8) | |
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Storytellers who found filming their story emotionally difficult | 29 (21.2) | |
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78 (57.8) | |
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Last name | 55 (40.7) |
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Specific transplant center | 24 (17.8) |
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Transplant or donation date, month, and year | 25 (18.5) |
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Geographic specifics of location | 11 (8.1) |
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56 (41.5) | |
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Last name | 30 (22.2) |
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Specific transplant center | 15 (11.1) |
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Transplant or donation date, month, and year | 13 (9.6) |
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Geographic specifics of location | 4 (2.9) |
aPHI: protected health information.
bDisclosure of PHI obtained from Ethical Review of Storytellers who completed the storyteller postsurvey (n=135).
On average, storytellers took approximately one hour to review the prompts and prepare and record a story using open-ended prompts within the video capture technology (mean 62.5; SD: 87.8 mins; range 5 mins-12 hours). Completed stories had an average length of 10 min (SD: 6:12 min; range 0:46 seconds - 32 min).
A quarter (34/137, 24.8%) of the storytellers stated that they had difficulty filming their story using the technology and 21.2% (29/137) of the participants found sharing their stories to be emotionally difficult (
Most storytellers answered the majority of the prompts that were available in their story guide.
Storytellers shared vulnerably about their experiences, both laughing and crying within their stories. Emotionally, people expressed gratitude for the gift of life, worry about whether the kidney would work, and concern for the health of the donor within their stories.
Content shared by donors, recipients, and family around open-ended prompts.
Prompts by story guide | Examples of storytelling content shared | |
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The best advice I could give someone else who is thinking about being a living donor is... | “...just go ahead and ask questions. Talk to the transplant team. Let them decide, let the coordinators decide, do their screenings, do their questions. See if you are a likely candidate. You never know. I donated, maybe you can too.” (Lisa H) |
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I ultimately decided to donate a kidney because | “Of course, there was nothing I wouldn't do to save my daughter's life. But, also, because the quicker she got off the [wait] list, the quicker someone else would get an opportunity.” (Luther) |
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The best moment after my surgery was... | “About 4 days later, when I was visiting Lexi again. I saw how much happier and healthier she was [...] just seeing how good she was feeling really made me feel great.” (Luther) |
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My kidney failure began when I was (X) years old. At that time, I was doing (common activities for you before the transplant)...but then I started to notice (changes that affected your daily life) | “Kidney failure began when I was 25 years old, I was at stage 3. My kidney function was at about 40%. When I turned 31, and I became pregnant, that is when I become stage 5. My kidney function went from 40% functioning to about 8% functioning.” (Kara) |
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Living without working kidneys meant that... The first time I had a dialysis treatment was... (explain how it felt) | “It meant that my time was limited. My disease started when I was 27, when I was 45, my kidney function has dropped to 9%. I felt defeated. A lot of the people that I talked to on my first day on dialysis had been coming there for 5 years.” (Rochelle) |
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I found it... (difficult /easy) to talk about living donation with my family and friends, because... | “Found it easy to talk to about living donation with my friends and family. Because of living donation, I am alive today. So, I talk about it openly.” (Holly) |
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We learned as a family what kidney failure meant physically for (Recipient). However, for our family it also... (Explain the ways it changed your family’s life)... | “…For our family it meant a huge lifestyle change. It was a huge financial burden for our family. It was mentally draining for my parents especially. I was 15 at the time, so, I didn't really grasp Hans's situation.” (Drea) |
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Some of the best resources I used to learn about kidney disease were... | “Living through Hans's situation as a family member. I was 14-15 when his life on dialysis began. It was an in-person, real life, first-hand experience.” (Drea) |
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(Recipient's) dialysis schedule meant that we had to change our current plans because... | “Changed our family's plans for traveling. We like to travel a lot. It changed drastically. We hated going and having him left out. So, we worked around it and there were days that he didn't feel so great. So, dialysis sucks. Period.” (Annamarie) |
Content shared by potential donors and kidney patients around open-ended prompts.
Prompts by story guide | Examples of storytelling content shared | |
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I first considered donating a kidney... | “When our family found out that my niece Marie was in kidney failure. She was fairly young, she was about 13-14. She was about to start junior high and she was about start dialysis. That is when I first started to think about being a donor.” (Monica) |
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Initially my attitude toward living kidney donation was... | “I was little, I was a afraid at first. I didn't know what it entailed and until I read about it more. I have two kidneys and I have one to spare.” (Kurt) |
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Once I learned more about living donation, I considered becoming a living donor because... | “Once I learned about kidney donation, I considered to be a donor because my wife had kidney failure.” (Kurt) |
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I could get a kidney from a living donor. So far...(tell what you have done or plan to do to find a donor) | “It is hard for me to find a kidney because; I need a B-, live kidney donor. I’ve done a lot of social outreach. I've made shirts, made some pamphlets, and gone on social media [to find a donor].” (Kabir) |
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I started having these symptoms... I was diagnosed with (explain prognosis), (X) months/years ago | “I was having high blood pressure and slowly I was feeling fatigue and I would always have this headache. I was not aware of what was going on with my health. I thought I was just too active. But, slowly the disease took over me and I had stage 4 kidney failure.” (Kabir) |
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To stay alive, I have to go for dialysis, which is... (briefly describe what it is, how often you go, your new quality of life) | “For my dialysis, peritoneal dialysis every day. Most people do couple of hours every day but I do about 12 and a half hours every day [...]” (Kabir) |
More than half (78/135, 57.8%) of the storytellers disclosed PHI about themselves, most often their last name, specific transplant center name, transplant or donation date, and geographic details about their locations. Some storytellers, 41.5% (56/135), also shared PHI about others involved in their living donation experience (
A minority (18/135, 13.3%) of the storytellers shared medical inaccuracies or overgeneralizations. Examples included, “…going on dialysis means your life is over and your caregivers’ life is over” or “…1 in 3 actually have kidney disease.” Statements that could be considered instances of pressuring were shared by 11.9% (16/135) of the participants. These included statements like “People who do not give to a family member are selfish.”
This study evaluated the feasibility of building a web-based digital library and recruiting storytellers to share their experiences. Using community-based participatory research practices and recruitment through social media, we successfully recruited storytellers involved with living donation who were predominately female, white, and motivated to assist others in making choices about donation and transplant. In general, it was more difficult to recruit minority storytellers and males to share their stories. As African Americans and Hispanics have 2.9 and 1.3 times higher ESKD incidence rates, respectively, compared with their white counterparts [
Thousands of kidney patients awaiting transplant die each year before a matching kidney is found [
At the start of this project, we were unclear how difficult storytelling would be and what types of content would be shared. More than half of those who were offered a link to record a story did not submit a completed video story, and about one-quarter of participants who completed a story reported either technical or emotional challenges when asked to reflect afterward on the recording process. However, the content shared, including poignant first-person recounting of fears, lessons learned, challenges overcome, and recommendations for others facing these decisions were very powerful. Future research should determine the key topics most commonly shared by storytellers and assess which storytellers and types of content most connect with different audiences. Further examination of the impact of storytelling combined with other, more traditional, educational strategies for increasing the number of living donors coming forward and LDKT rates is also needed.
Transplant professionals who served on our ethical review board concluded that, in general, storytellers act ethically; however, reminders should be sent to ensure privacy and prevent the disclosure of PHI. Clarification of what not to share in a public forum helped reduce disclosure of PHI, as did editing afterward. Additional work is still needed to explore ethical issues, including whether storytellers seeking living donors should be allowed to disclose their contact information in videos shared in the library.
Moving forward, there are many applications of the Living Donation Storytelling Library methodology. Stories can be easily incorporated within the traditional educational process during transplant or donation evaluation, provided as a general introduction to transplant in dialysis centers, or embedded into educational portals linked to electronic patient medical records. Education delivered through these portals is quickly becoming a part of the standard of care [
Finally, the Living Donation Storytelling Project may be particularly effective for reaching certain groups who are not well-served by existing educational strategies. Specifically, stories may also be a gentler way to introduce the option of living donation for patients who are concerned about harming a loved one, those who cannot read or have difficulty reading [
In summary, watching real-life stories can be reassuring, empowering, and, sometimes, inspiring [
Steps for building a digital library.
Living Donation Storytelling Project website search engine.
Living Donation Storytelling Project storytelling instructions.
Living Donation Storytelling Project transplant center search tool.
diffusion of innovation
end-stage kidney disease
Institutional Review Board
living donor kidney transplant
protected health information
University of California, Los Angeles
The authors acknowledge StoryTap and Bernadette Butler for customizing a digital interface for capturing video stories; the Terasaki Family Foundation, the charitable grant that helped fund some of this work via grant funding; Sarah Brecher, BS, and Natalie Pita, BS, for recruiting and supporting storytellers and editing videos; the many individuals who shared their stories; and transplant centers and institutions who referred storytellers, including Mount Sinai Medical Center and NYKidney.
None declared.